Saturday, December 03, 2005

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.

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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.

Thursday, December 01, 2005

Sparrow Girl - Meeting Death

Image Hosted by ImageShack.usPeople 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.