Rolling home

I've been meaning to write-- but I couldn't find the time, nor tone, nor words. I've been taking tumbles and spills of late, only one of major significance... until last month, when, almost a year to the day from my first blackout/fall, I fell again, and came away with the usually bruises and scrapes... and unfortunately, I broke myself, as well.

It's a small bone, that patella, but one that plays an important role. When it breaks, it needs to heal, but can't be casted, can't bear weight, and can't bend. And since my other knee, bruised enough that when people saw it, they blanched, was somewhat unreliable in holding up 120 pounds of bookczuk, plus a couple pounds for the leg brace/extender/cage the wounded leg is in, crutches for a primary means of locomotion was apparently out. So wheelchair, it is.

Keep in mind, I'm very comfortable around wheelchairs, both because my mother used one and from my years working with children in the Spina Bifida clinic. The one we have, while not exactly suited for a leg injury, is easily manageable. I appear to have inherited the wheelchair gene, and can maneuver in it quite well. I've MacGyvered a leg extension for the wounded limb, and jury-rigged the seat so that I'm sitting relatively evenly. Because I do use the crutches for short hops (ha!) and a cane holder attachment would cost $70, plus shipping and installation, I've figured out a solution for a way to carry the canes, and Mr Grabby, my reach extender stick for picking up stuff, with me. It's not particularly elegant, but it works.

Javaczuk has been a hero, taking over my share of household chores (and doing a better job) and cooking, too. Not exactly how he'd planned on spending the early days of retirement, but hey, I'm glad and grateful he's here.

The initial problems of pain and discomfort are lessening, as is my regular frustrations with my inability to do the things I want to do. I miss being able to sidle into my workspace and do my pysanky and other art, but most of all, I miss walking. Ambulating around Charleston is one of my greatest joys, particularly in the spring

Doing "lap art" because I can't get into my workspace #determinedartist

. The loss is almost visceral, eased a tad by the outings I take with Javaczuk, his walking, me rolling. I'm slowly working up strength in my arms as my leg withers from disuse. (The leg muscles will come back as soon as I'm allowed to exercise as I like.) But for now, for another month I'm into alternative ambulation, be it crutches for indoors and short distances, or the chair, which one of my JordanCon friends has christened "Wheels of Time."  I'm hoping to be fully ambulatory in time for the JordanCon art show, but if not, we'll do what we need to do to keep me moving.

Oddly enough, I've noted when I wheel in the chair that I get auditory memories of my mother. I'd forgotten how her hands wheeling the chair made a whispery sort of sound, or the clank of her ring as she wheeled. Even the sound putting up the footplate is evocative. It's a sound that I lived with for 40 years as she wheeled through life, making magic and memories wherever she went. And apparently, she's doing that still.

My mother, with her eldest grandson, circa 1991

I get by with a little help from my friends

I've hurt my arm. The details are unimportant, and yes, it's healing. What is significant (for me, at least) is that it is my right arm, the lead hand in all my artwork. Typing can be done one-handed. No one takes off points for wiggly lines. Autocorrect can actually be helpful in fixing some errors (though it has made some extremely humorous changes a few time, of the sort that could get me on one of those "21 most hilarious autocorrect" lists had I not caught them.) But the kind of artwork I do, on egg or on a flat surface, takes a fairly steady hand. 

Even though the injured area is recovering, I realize there may be a day when recovery only goes so far. For most of my adult life, predating my pysanky writing, I've had compression of the ulnar and medial nerves on the right. Surgery wasn't recommended until I was out of my childbearing years, as the condition can reoccur with the changes of pregnancy. But, by the time I was "in the clear", I'd developed a pulmonary condition and was advised to not have elective surgeries, if at all possible. So I puddle along, hand pain rolling in and fading out. I have exercises I do daily, braces, therapies for exacerbations-- a full regime to call upon. The nerve trauma was flaring up when the injury happened, so this is a double whammy.

I've been thinking that should the time come when I can no longer hold a kistka in my right hand, I should start training the left. In other words, I want to become an ambidextrous pysanky writer. It's ambitious, I know, and there are many folks who can't master the art even with their dominant hand fully functional. But I want to try.

Yesterday, I started my first egg with my left hand. Got a few lines done, then pretty much wept, because I was so far from where I am on the right. I'm like a soprano with too much vibrato. But, I decided to post the picture to a pysanky group I am in. These folks are wonderful. Some, I've known for almost 20 years, and we've migrated to this group. Some I know only a few short months. A couple, I interacted with for the first time yesterday.  Since my post (above), encouragement, sympathy, suggestions, and humor have poured in. 

And that's not all. Some of these marvelous souls are taking up their kistkas, too, in their  non-dominant hand, to try and write a pysanka-- joining me on this weird one-hand-behind-my-back journey. I read that and teared up. I seemed to have gotten a little bit of fellowship in my eye.

Years ago, at a BookCrossing Convention here in Charleston, a friend I only knew from the internet, who'd just flown in from London, looked around the room at all the names she knew from our online group and said, "All my imaginary friends are real!" All mine seem to be real, and those who aren't sharing books with me, seem to be cheering me on as I learn to write again. Friends do indeed take you places you never thought you'd have the courage to go, and if you're very lucky, they travel the journey with you. Thank you incredible eggers of Incredible Eggs and of Instagram.

On Wellness

The Springtimes of my childhood were filled with forsythia and dogwoods, the soft velvet of pussy willows, the return of robins, hungry for worms after their their long flight north. The days were marked by the greening of the trees, and by daffodils, pushing their heads up from the thawing ground. Spring brought a cleansing, as homes around us cleaned and cleared in preparation for Pesach. Being ecumenical in the approach to life, my friends and I dyed eggs, while wondering where the Afikoman would be hidden, if we we would be the one to find it, and what our prize would be.

In the springtime of my fifth year, my mother took me downtown for a special girl's day, to buy a new dress to wear for the holidays. It was fabulous to have my mother all to myself, not having to share her with big brothers, father, dog, and whatever else could grab her attention. We were headed to Hecht's, waiting for the light to change to cross the street. There was a bus at the corner, loading passengers heading into DC.

Red light to green, and a flashing walk sign; look right, then left, then right again. I pulled on my mother's hand to cross the street.

"Not yet, Mamele, let both buses pull away from the curb. We don't want to step between them. The driver of the second might not see us."

I looked again. There was only one bus. What I was witnessing was one of the first manifestations of my mother's Multiple Sclerosis. It's called Diplopia, or double vision. The disease that would hound her heels, but never conquer her, had grabbed the brainstem, creating lesions, and causing problems for her cranial nerve.

Over the years, my mother's MS tried various ways to take over her life. But she was amazing. She charged forth, living her life fully and with flair. People used to say to her her how hard it must be to be sick. "I'm not sick. I'm one of the healthiest people around. I just happen to have MS".

Of course, the same knuckleheads would ask me if it was hard having a mother who was "crippled", because she used canes, or braces, or walkers, or wheelchairs to help keep herself mobile. What a ridiculous thing to ask! She was my mother; we rode the curves life threw us together. That was the life we knew. Any other type of life was not reality. I grew up with her coming to terms with what living with MS meant, but not being defined by it. I knew no other way. She was my mom, and she was terrific.

These thoughts recently came to mind in two conversations with an old friends, who found me online. For one, it was after a gap of close to 50 years, but she found articles that led her to me. She remembered the vision trouble my mother had in those early days of MS, back in Silver Spring. She said, when we reconnected by phone, "I know she was sick, and had such problems seeing, but there was always a twinkle, a sparkle in her eyes. Coming to your house was coming home. Like walking into your brain and feeling just right."

The other friend and I reunited via Facebook. He is  living with a life-altering disease. From what I can tell, he is facing it with courage, and reaching out to help others who suffer from severe neurological insults. In my mother's last days, when she was ravaged by the cancer that hastened her demise, we made a pact to face life with "courage, caring, laughter and love." It was only after she passed that I realized that was how she faced all her days.

Apparently, courage, caring, laughter, and love are a legacy she passed on to her offspring. I see it in my brother in great abundance; it was a way of life, too, for my elder brother before his death. And with my wonky health challenges, I do my best not to be defined by the condition. I'm not always successful, but even if I have to curtail an activity, or adjust to accommodate and stay safe, I try to keep going. It's not that I'm strong, or special, or smart, or wise, or any of that crap. I'm Ruthe's kid, and I'm living life as she taught me to do. I try to look twice before I cross the street, to not step between buses, and to walk forward, with a twinkle in my eye.