Life Deflavoured

Cold is not cold for me as it is for you. I don't register "cold", oh, no, my stupid (actually damaged) brain registers the feeling on my skin as pain.

I don't develop goose bumps, I don't ever shiver though to touch me I might be a block of ice. To me it feels as if an army of small creatures armed with cheese graters are scouring away at my flesh.

I stopped registering "cold" quite suddenly about three years ago, before that the body was slow to react, but eventually my teeth would chatter and I would shiver. One snowy night walking my dog I came to the strange realization that it did not feel cold to me, but reasoning how cold it was and how long I had been outside this was not right, not in any sense. I couldn't sense heat either, but heat, other than scalding water, was unlikely to do much harm. It doesn't fritz out my nerve ends like cold does, if anything ambient heat makes my nerves pleasantly numb. I use a candy thermometer in the bath and shower to avoid scalding. I suppose that doesn't come under the heading of "normal" either. Short of living in the amazon exhibit at the aquarium there is nothing I can do except cope as best I can. Medication to bring the pain levels to bearable (where the cheese grating gnomes will sit far away from me for a while), clothing and heat sources, like steaming coffee and tea, clothing (lots of it). When it rains, or I'm in the shower the top of my head feels nothing, very odd. Contact burns which normally would blister, don't, just leaves a scorched mark, but no blister. Nothing, but nothing is normal. As each passing month more and more is abnormal I am uneasily reminded that this is a progressive deterioration, and for each change millions of brain cells have gone, poof, and you can't reanimate dead tissue, hell, they can't even pinpoint the damage.

The cold also makes my muscles rigid, blood vessels constrict to protect the inner organs, lack of bloodflow makes muscles crampy. The damaged brain often sends signals to contract and forgets to tell those same muscles to relax. My face which hasn't any insulation left (looking kind of gaunt) and hands are the first victims of the cold, I wear a grimace and my hands unless kept moving shape themselves into something that looks like a chicken claw. At least my grimace looks like a smile, but can be inappropriate when I cannot wipe it off my face.

The cold makes my nose run a and my eyes tear (well, just one eye), but lacking the muscle coordination to prevent a shower of nasal drip can become quite the embarrassment (in desperation when going out I pop a decongestant to dry things up a bit and walk with hanky to my face).

I do pull it together for an hour or so a day to walk the dog, run and errand and the rest of time drag myself about between lie downs. Friends who see me remark how well I look, yeah, that one hour a day. When the remark is made it devalues just how totally rotten I really feel. No appreciation for the work and sacrifice to put myself out there for and hour of kinda "normal".

Unless you've been there you cannot know how it feels to know your body is rapidly losing anything of "normal". I remember shivering, teeth chattering, goose bumps, swallowing without having to make it happen. I remember having the energy to spend a few hours with friends after a full day at work, and still my house sparkled. I remember planning meals according to what we'd like, not what I can manage to swallow enough of before becoming stone cold and unpleasant to eat. I use memories of taste to taste with, if I don't put out the effort to remember everything is uniformly flavourless. Digestion provides body heat, well that's out for the most part. See how nothing is normal?

I valued my complete complement of senses, smell, taste, touch, hunger, thirst, sleep, oh, sleep, honest to goodness real human sleep. sleep complete with dreams after some cosy warm time drifting, warm. The feeling of being full and warm after a meal. Feeling energised by exercise, not feeling near dead after a few minutes of rushing around my tiny apartment.

I've given up driving (slow reflexes, faulty depth vision), walking in high heels (balance and feeling the ground), a drink now and again (some unexpected reactions, not a bit pleasant), movies (just cannot sit still that long without getting rigid and cold), and forget about having sex (no details, but let's just say too scary, won't be doing that again). Sigh -- but I look well?

Is that really what it comes down to? Pity the wretched because of how they look, don't pity the attractive, because it is really only important to look good?

I know that everyone with ideas on how to keep warm has the best of intentions but I haven't a clue how to convey, succinctly, that my body just does not work as you'd expect.

As bad as dealing with the cold is, even worse is the level of functioning with limited mobility and cramped hands. Not because it is painful, the worst is that I cannot do what I'd like to. Millions of worth while ideas every day and I cannot execute but a couple of them at best. There is a heap of bright shiny ideas and inspired artwork clogging up my brain, stories, paintings, poems, correspondence, and if I'm lucky I can manage and email and a bit of knitting or crochet work.. If, that is, I've managed to get the necessary everyday hygiene, keeping the body warm and housework out of the way and have an ounce of energy left. Ghastly, I finally haven't got to work at a soul sucking job, but now have even less left to work with. I'm looking for a silver lining and am coming up with burlap. I feel apologetic to the cosmos for falling short of my potential. Honest I tried very hard. Not quite good enough, sorry.

Forgive the whine, forgive me if I am over explaining, but you see, there has been no indication that anyone outside the orphans with the same brand of dysautonomia, actually "gets it". I'm living in this body, it still feels entirely unlike my body to me, rather like having been taken out of my perfectly tuned former body and given this total jalopy which only looks the same. some things in like you just cannot get used to, rather like losing a breast or a limb. I suppose I have only phantom senses.

Sparrow Girl - Meeting Death

People die. People we know and love eventually leave our lives forever. As a child my naivete was often abruptly brought to an end and death was no exception. Old people were going to die, life came to an end in the aquarium, then my cat died, but people, well that was much harder to accept.

The first death of a person in my life came when I was near four years of age. Maya was a beautiful woman, tall, elegant with long black hair and exotic green eyes. She was my mother's friend. Once before I was born my mother had been a nanny to her young sons. The youngest son, Robert was about six when I was three and whenever Maya came to visit she would bring Robert. He would politely play with me, because that is what his mother expected of him, but he did it with great sweetness and I adored him.

Maya was in my young eyes the ideal of what I one day hoped to be. She sat on those occasions, perfectly dressed in the latest of haute couture suits, silk stockings and Italian pumps. To watch her cross her legs, sit back and tilt her head to one side while her clack hair cascaded over the edge of the chair was an all out performance, you could hear the music that should accompany such a perfectly choreographed movement. No surprise, Maya was after all, a very well known and highly paid fashion model. She would come to visit after the shows and Paris and Milan on her way back to her flat in London. Her sons attended school in England where their pianist father lived. She was not married. I am not sure why my mother impressed that detail on me when I was so young, I don't think it had anything to do with the morality. It had more to do with a level of envy my mother felt, I think my mother would have been happier had she been single, but she lacked inner strength to say no to my father's proposal.

A letter with a black rim came to the door by courier, and my mother without opening the letter sunk to the floor in our vestibule. I sat by her, feeling oh so terribly clumsy, not knowing if I should hug her. All I could do was sit, when mams was upset hugging could be exactly the wrong thing to do. I'd been shoved away a few times and barked at. I loved my mother as we all do, so I sat by her gingerly, just barely touching her dress, her dark blue dress. She bit her lower lip and cradled her face with her free hand, her short curled hair stuck to the tears rolling down her face.

We sat for some time on the floor. Mams became quiet the moment suspended until the tearing open of the envelope. She hesitated to pull out the card. Mams had lost so many people in her life, more of her friends and family had died during the last year of the war and still more afterward to disease neglected medically during wartime. In my brief lifetime I had lost no-one I knew. Until now.

She moaned it, and screamed it, sobbed it, gasped it. Mams is dead, over and over. Later mams took me and had tea with a neighbour, and there I heard the story of Mams, her brief twenty eight year old life. The eldest son was fathered by a pianist in England, the other son the product of an anonymous affair, with a shady character according to mams. She was a fashion model from the age of eighteen and lived a glamorous lifestyle afforded her by being one of the most desirable ramp models for various haute couture houses. She lived hard, loved many times and was heartbroken every time a relationship ended. I remembered the many crying times during her visits to our house.

The mams I'd known was glamorous and kind, loved her children and was very generous with considered gifts on important occasions. She was a good and supportive friend to my mother and helped her set her singing career on course. Often they were like schoolgirls all gossip and trying on each other's clothes. I think I felt superior to all that nonsense and was slightly embarrassed by it as was her Robert. She hugged me when she came and left. I could not imagine her never again dropping by.

This same woman at twenty eight lacked the support in her life to deal with a profession that was less than accepting of advancing age. She'd already had cosmetic procedures and worked very hard at maintaining the perfect figure. She'd had dangerous silicone injections. She'd become depressed when she felt she was losing her status in the fashion community. she needed the income to raise her sons and could not transition to another profession, all she knew and all that mattered was modeling and being the most desirable arm-piece receiving the most extravagant gifts from the most wealthy men in Europe. It was ending and she had no idea how to deal with it. Maya had tried to land a position and a chance at a new life in Australia, but when it fell apart for reasons I don't know she "stuck her head in the oven" as my mother put it.

Sticking your head in the oven was not something I could picture or understand. For one thing we never had an oven, and I'd no idea what that would look like. We had a wood burning stove in our apartment, it had one spot to put a pot on, but no oven. I knew bakers had ovens.

I did not understand how an over would kill you or why you'd put your head in there. Surely that would hurt, it would burn. Clearly this was not accidental, something had been very wrong here.

Suicide was not understandable to me. What I could understand is that Mams was depressed and desperate with too many responsibilities and not one person willing to help her with the boys and a new career. I did know even at that age, the very importance of people in your life who love you unconditionally. I was so incredibly sad that no-one, not the father of her children, not her employers, and for that matter not my mother, could keep her from being so sad that she died.

It affected my mother. Mams became more focused on her marriage and home and perhaps a little negligent of her singing career. I think she was scared that if she lost my father, she too would end up with her head in the oven. What also happened was that my mother felt, as Maya must have, trapped in her own life, unable to decide on the basis of what she wanted and thus settling for the safest choices. Maya's death was one of the pivotal experiences in my mother's life and she kept it all inside. Sadly, rather than recognizing that Maya's not calling out for help led to her death more than anything, my mother often in great psychic pain shut others out and herself in. These were beautiful and talented women, delightful company and I cannot think that no-one would have stepped in to help, and oh, how different life could have been.

So at age four I had learned you could die, young and beautiful, loved by her children and friends of misery. The oven was not important, that no-one helped when she needed it was important. My mother being sadder than before mattered. The death of a person affect everyone profoundly. It matters that they die, also how they die, how young, how much promise. All lost. All gone. Life even when it seemed to be most perfect, was not. How horrifying that no one could just sense what was going on, because she did have friends and she was loved, and she left a sea of tears behind. I doubt she knew just how much I admired her and wanted to be like her, her independent spirit, her talents. she was not just a runway model, she was a mother, an accomplished pianist in her own right. It is beyond belief that no one noticed the pain she was in.

Hats, Bunnies and Obligations

Happily, I've managed, if nothing else this week, to make a dent in the mountain of things needing to be done. The enormous pile of obligations and tasks have kept growing especially during those days I can do little more than flounder. By flounder, I mean that motionless lying down, immobilised except for the one eye kept on goings on, as best you can with a ragng headache, and no energy whatever. Some of the stress of having to fight for the barest of existence has let up a little lately. I can now afford to eat twice a day at least, and it is making some difference.

On a really good day, I think I might even get better one day. Polly-Anna optimism or knee-deep in denial, can't tell you which. I've learned to make a point of doing some actual living each and every day. It is very important to experience moments of joy, even if otherwise existence is painful or just plain dull. The human spirit craves experience and moments of feeling good about being alive can go a long way to bringing pain levels down and the spirit more willing to work up the desire to fight on and wake up the next day and the next.

In that spirit, other than getting caught up on some basic housekeeping and reading correspondence, I've managed to spend some time with my sister and with her little 3 year old daughter played with hats in a local boutique while my sister was trying on some clothes. I forgot what fun that can be, just the dressing up and playing it out depending on the hat you are wearing. I even laughed out loud with her. One hat she could not bear to part with and she was given that hat from the both of us. I should have brought a camera, darn. My sister bought me a rather extravagant pin for my bunny coat.

What is a bunny coat, well, political correctness aside for the moment, it is a coat made of the hides of wee bunnies. I bet they were tasty too. No, I'm not even a little vegan, though I was raised as one when I was a child. Broke nearly every bone in my body by age 16, started eating meat, not in great amounts but here and there, and haven't broken a bone since. I don't think that says anything about either life style but it does say a little something about fanaticism.

I came by the bunny coat via my daughter who presented me with it a couple of winters ago. she knows how miserably cold I get, and there is nothing warmer in the entire world than and animal pelt. Sorry folks but synthetics don't cut it even a little. Maybe that's why so many older women cling to their minks not wanting to give them up. Purely from a touchy feely perspective there are some animals I think are wrong to wear. The more sentient the animal the less I want to wear them, that incudes wolves, foxes and certainly cats and endangered species. Mind you mink is nothing more than a weasel (I can just hear ferret owners seething). Pet chinchillas are adorable but if I'm going to freeze to death or wear their pelts guess what, touchy feely don't keep you warm. I've had several pet bunnies and I was incredibly fond of all of them, and I loved each and every chicken my grandmother had running round in her back yard when I was little. It took a little getting used to you favourite hen becoming soup for the weekend.

The coat had previously been owned by another lady and was inherited by my daughter, I honour both her memory and that of the little bunnies whose pelts keep me so warm. I don't see a need in owning a second fur coat of any kind, it really is just terribly nice to be so warm for a change. I can't think it would honour the furry animals to be unappreciated. We do no favours to animal kind and the ecosystem by manufacturing synthetics either, never mind they are never going to be as warm and light. Manufacturing uses vile sludges of chemistry with effluent that is disposed of in some cases fairly indiscriminately here, but most especially in the third world where ethics and well-intended "rules" simply do not apply. So I'm fine and happy with the bunny coat.

Feeling better but not motivated to paint or be terribly creative I've spent more time crocheting hats than sketching, painting of sculpting. Rapid robot movement keeps my hands warm and does not require much thought, the brain needs some rest. This afternoon I was playing with two of my recently crocheted hats (both done in the last 48 hours) and my camera and put together the animated picture below. The backgrounds are from other photos taken other days, and I did not leave my chair to take any of them. Just a little fun with hats, and you can se the bunny coat and if you look the green coloured extravagant pin.


The pile of things undone is getting smaller day by day, as long as this level of functioning holds I just might be able to see over the top of it soon. I can make more hats, paint some, sculpt some and write a few stories..

Koschey Ready for the Masque Ball

Koschey knows I hate clowns with a passion. So, of course, the wretch has insisted upon coming as a clown to the Masque Ball. Well you won't get me anywhere near him and I'd advise the rest of you to avoid him and that Party Punch he is in the habit of distributing all over the world. No wonder everyone is suffering from increased anxiety.

The Green Chinese Dresser (a performance)

I hope you will enjoy this performance, and my costume. I am a bit early, but this is the only night I shall be in town...

Green Chinese Dresser

In the middle of the night I stretch my arm

up to the top of the green Chinese dresser.
It’s too tall for a bedside table,
but I wanted it close.
My fingers skim the gouge in the smooth lacquer,
one in a list of crimes for which
my ex-husband
was held accountable
in the spring of 1993.
This chest used to hold
silken scarves and gloves,
fancy linens and tiny crystal perfume ampules,
boxes of fine gold jewelry.
My grandmother’s "special-occasion wear"
was perfect for my everyday visits.
After forty years, this dresser is used to me
and my no-longer-small fingers
as I pull the drawer open with a
silken sigh.
But it has changed.
The enigmatic coquette
holding a lotus blossom
has become a marketplace auntie,
holding a basket of bread and fruit.
Glamorous silks and kid gloves
gave way to everyday ephemera.
In these fragrant drawers
my grandmother’s scent lingers,
along with
a diaphragm, pantyhose,
wrinkled photos, receipts,
love letters, scotch tape,
spare buttons, sewing thread,
tiny scissors, nail clippers,
my favorite lotion,
pens, spare beads, warm socks,
and even, once,
a vibrator.
I feel around in the bottom drawer
pull out fuzzy socks.
Slipping them on my feet,
I curl into my warm bed
knowing that the green Chinese dresser
stands tall
close by in the dark.

A Masque Ball in the Boudoir

Baba has been thinking and when Baba thinks anything is likely to happen. She has been wary of all these artistic types who have descended upon her and has decided to test them a little. She is planning to have a Masque Ball in her Boudoir. Everyone is expected to come in full costume, make a grand entrance and amuse Baba with a short act. Is that a distant cackle I hear or that old rooster crowing joyfully?

Life Drawings - Baba Yaga

A lovely way to spend a Sunday. In partial sun life drawing one of the more interesting subjects I have had of late. She stood with gentle timeless curves deep in thought. Perhaps it was those thoughts that transformed her in my eyes from one drawing to the next. The image was not of one woman but all the women she had been during various parts of her life. Not just the more elderly woman who stands before me here.


I saw in her also the young woman full of promise, not yet worn out by life's obstacles. She was soft and gentle and danced in moonbeams and in front of delighted audiences, the young gypsy dancer. In her own right she was a draw at any box office in the Northern towns where she toured. Not perhaps the first string of dancers, but assuredly the second. She worked hard and was given respect and an income. Who could want more.



She had kept on dancing no doubt, past where she was really up to years of one night stands, at times mounting a production all by herself, making her opportunities where they did not just simply present themselves to Baba Yaga. To get a few extra gigs here and there she danced under various names and each of her performing persona took on solo performances. It is a wonder she could even keep her bookings straight. Then I could see slowly life wearing her down. It was no longer about dancing but in surviving what very often were some very unpleasant realities. Still she could muster a straight, strong back to face the next day, and the next.

At other times of desperation made her so tired she could not even stand up. Life is hard for someone living by heir wits. Talent does not always happily meet up with opportunities to put them to use. That is the very sad thing that by now those days are gone, and the great talent has been betrayed by a body that just simply can no longer keep up with the demands of just talent. Never having reached the stature of "star" performer no allowances would be made to help her earn a living through dance anymore. so she was back, just a gypsy doing gypsy trades, as her mother and grandmother had also done before her.

Life is etched on our faces by the time we are fifty, our bodies are no different. Aside from the lines of time and trouble many women, and Baba among them, have a poetic elegance that though changed by time still is a thing of beauty. I could not help adding this portrait as she sat deep in thought. Not just the sum of her years, but the sum of every emotion, experience and inherited trait. Each of us are precisely so unique not just because of out DNA but the life we live.

Baba's Biographer

Baba's Biographer is at the market providing some insight into this fascinating woman. She writes that "The story of Baba Yaga is prime among many images of the Black Goddess. The Black Goddess is at the heart of all creative processes and cannot be so easily viewed. Men and women rarely approach her, except in fear. Women are learning of her through the strength and boldness of elder women who are not afraid to unveil her many faces.Sofia as wisdom lies waiting to be discovered within the Black Goddess who is her mirror image. Knowing that, until we make that important recognition, we are going to have to face the hidden and rejected images of ourselves again and again.

Read about Baba Yaga and let her be your guide during the coming weeks.