I am beginning to understand why people who are injured can lose the use of their limbs.
And why pathologists and homicide detectives specialise in dark humour.
Then there is the rather horrifying realisation that my brain is doing inconsistent things with input. 1+1 no longer seem to =2 in the lexicon of my unfettered mind.
Back to the first statement about losing the use of limbs. Despite the fact that I feel no pain on my left side, using that arm and leg requires a tremendous effort as the arm feels immobilised at the shoulder, fastened down with heavy weights or super strength resistance bands and it would be so much easier to let it rest.
The leg is not so extreme, just supremely tight around the knee suggesting that I avoid bending it. Then there is the crushing grip about my left ribs which says 'don't breathe too deeply.
And when my internal watcher makes jokes of my deepest fears I really do not need anyone, especially my mother, to say 'don't you think you should be taking this more seriously?'
What happens if I take it seriously? What happens if I do not?
I went to a neurologist . I let them take my blood. I had an EEG. I am scheduled for an MRI. I cancelled my vacation plans.
Explain to me what exactly it is I need to do to demonstrate that I am taking this thing seriously?
I am so angry! My sister is here. Visiting from St. Lucia.
She asked how I was doing and a mention of my symptoms opened up the floodgates of memory she supposedly lost in 1998 and drowned me in the stories of her stroke, her feelings, her numbness, her nerve endings coming back to life. Like I give a flying f@@k right now.
Does using '@@' make that any less a swear word? Stupid hypocrisies we have to practise. And I am angry at myself because my mouth opened to say that to my sister and I closed it altogether instead of finding gentler words to say 'right now I need to focus on myself and keep my blood pressure in check'.
Truth is there were no gentle words with my reach, just this new willingness to speak first and damn the consequences as I did when I was three, or thirteen or seventeen.
I even said out loud, the taste of tears like acid burning in my nose "I'm feeling scared' to have them both tell of their great fears in times gone by, and how they suffered.How I am strong and can get through this.
Yes, I am strong, but right now I want to shriek can't you SEE ME? Can't you HEAR ME?
I am losing control of the one thing I lay claim to, my physical self that I feed and bathe and care for. Oh, I have always known it is just on loan, a finite span of time to sing, to dance, break hearts and mend them fall in love; but for that span this being that I am was mine.
And now an egg I touch turns into shards, dripping slime, because a nerve goes into spasm. My finger bleeds because I did not feel the knife and somewhere in the recesses of thought the monsters gather, chortling at the knowledge that darkness hovers on the edges of my world, just by the margins of my eyelids.
Even the anger serves a purpose, it is just energy that I can use to fight my current battle. Just writing this and I have gone from pseudo calm to rage to bedrock peace even if for just a moment.
I want to write a poem, but I cannot find the words and was fading at the thought of all the energy required to type and then to proof read. Then I decided it did not have to be a poem, i just need to let my soul out in the air a little, let it breathe and see the sun with all the promise of tomorrow.
Just push through a little, stress the muscles, keep them living, let the people who cannot see or hear me live their dreams in comfort, we all do the best we can at any given moment.
Right now the best I can do is write a blog, and rage a little, and admit I am scared as my systems keep on failing so gently, an imperceptible decline unless you live inside my head.
Words float on air. They are shaped by lips, by the contours of the mouth.The precise- or imprecise placement of tongue and teeth.
They can be used to paint the colours of the world for ears to share eyes' bounty. They can serve to cement lovers, families friends into bonds that glow with passion, with love, with understanding.
They can be the chisels, knives, and bludgeons that take those bonds and shatter them beyond repair or leave the dream crushed and drowning with the dreamer, crawling in the mud stirred up by words that disbelieve, throw water on the fertile soil of creativity.
Words can build or break down walls. trigger tears or laughter. Words can play our heartstrings like a master and open up our purse, our bank account to greedy fingers hiding out behind the music we are hearing.
They dance on paper. On screens across, around, all through the world's community, drawn closer by the threads we weave, the words we trail and leave behind for the Universe to trip upon.
They also build up shield to hide behind, to take a rest behind. a breathing space before spilling out the words that add dimension to imagination bringing thought to concrete, making maybes closer, day by day to statements.
I work my butt off finding the positive in things. It has taken years, and I am far from perfect at it but I hold things lightly in my mind, keeping my opinion tempered with the opposite point of view to minimise the knee jerk judging that everybody does.
We cannot help it. The organism is hardwired for survival which means split second analyses are needed, fight or run, eat or avoid. If our react first think later gene was weaker i suspect we would be the Late Human Race!
I am avoiding talking about my doctor visit. I am frustrated as I came away with very little meat despite burrowing in with questions like a pit bull.
We established firmly I do not have MS, have not had a recent stroke, show no signs of old asymptomatic strokes, TIA's or other brain attacks.
We thoroughly discussed the fact that all my symptoms could be resulting from the three areas of my brain that are remarkable - and I asked about false positives and artifacts, a faint persuing hope dismissed with finality- the largest sitting in the brain stem, that rich conduit of nerves which helps to rule the world. Or at least, move your fingers when you want to.
Then I got into the "W's" What, Why, What next, oh let's not forget the How? As in how did this happen?
This is where my neuro fell back on doublespeak (he has only met me twice).
I was going to try to outline some of the discussion here but I find I am not ready to do that yet.
He has requested that I have lung Xrays, and an ultrasound of my liver and gallbladder. And. a lumbar puncture to inspect the cerebral fluid. He wants them done this week so I m going to be busy.
Basically we are exploring the possibility of some encapsulated pockets of infection which will manifest in some way in the contents of the cerebral fluid where my blood work came back blameless - degenerating cells perhaps?- and checking the rest of the real estate for uninvited tenants sending out squatters. I have had my knee jerk reaction, but I am trying to hold it lightly in my mind
there are quite a few people offering me strength this morning. And I thank you. I need it.
this morning, in the shower, i got frustrated because how are you supposed to wash your right foot when you can't stand on just your left foot. Actually I sat down and that worked fine. Then i thought bad thoughts about myself, castigating myself for making a fuss when I am really not that badly off.
Then I stopped that. The truth is, for me, this is a nightmare of coping and confusion. Today it is not about anybody else. It is about me. My feelings and my fears are just as real, as valid, as anybody else's.
So today I am going to treat me the way I treat other people. This is a big scary thing, I am doing all the things I need to do.I am doing my best and once you hit a superlative you cannot go any higher. These are the things I would say to someone else (of course, I would change the pronoun!).
And to all who offer support and send a thought or prayer my way, know I will feel it. i believe that.
This morning changed the world
for me
imagination turned
to real and all the thoughts
I would not have,
came out
and danced beneath the sky
expressed by someone else;
there is a space of silence
where I sit, and cross eyed
try to watch myself go crazy.
I make bad jokes
and count the breathing
one, in, two, out
life happens and moves on
while I just laugh because
right now, right this moment
I can see it, can't describe it
but I see it and I know
deep in my bones that life
is a belly laugh
waiting to be taken
and we tiptoe gently
round the edges
instead of diving in
and grabbing
with both hands and laughing
with our heads thrown back
to capture sunlight in our throats.
The fears of yesterday
were far too small.
life wants us to think big,
live large and richly
because the news is never bad
it's just a matter of opinion
and perspective
a vision that will change
by the next morning
when the latest news
is added to the mix.
tomorrow I may cry again
or rage, but in this time
I sit suspended in the silence,
lips parted in a smile
just a moment from exploding
into laughter, because, right now,
I get the joke.
I highly recommend that you have someone drive you if you are going for a brain scan.
The scan itself is non-invasive - a bit noisy but interesting noises - and painless.
When everyone gets excited, calls in the doctor and wants to inject you with contrast material at first you think "Good!" They have found something! I am not going crazy, and now they know I am not making it up!"
When it is all over and they say we will have full details on what we found on friday and you thank them, pay and go start your car it suddenly hits you: THEY FOUND SOMETHING IN MY BRAIN!
That was the last coherent thought I had. I really should not have been driving. I got home in one piece and neither of the two road accidents I passed had anything to do with me. Really!
This end I got out of the car to find myself encased in mental cottonwool, not able to focus enough to walk from point a to b. I wandered aimlessly about the garden, meandered over to my friend's place but she was out and I think my mother is asleep as her place is buttoned up tight.
I put the kettle on and did not make tea. Made a call to confirm a recording time for tomorrow.
Now i am here thinking whoa i wrote that stupid poem about my brain thirty years ago! I don' even remember all of it, nd have no idea where it is. This is heavy shit.
I'm not even sure what I want to do. Cry? Call up my favorite ex-lover and say 'hey,wanna come over and affirm life with me?' Sit in a corner and suck my thumb? All of the above?
Actually, I am going to try the tea thing again and I am going tro have a piece of cake. Or two perhaps.
I'd like to go and change my DVD's but I still should not be driving and now I know that. So i won't.
If you ever have to do it, take a friend. it will be better for you.
I am thinking pancakes would be nice this morning, golden syrup dripping down the edges, the rich buttery flavour so much rounder and more fulfilling than maple syrup! Oh, and a quick squeeze of lime to add an accent and a counterpoint that bounces off the fragrance of the coffee, tapestry of tastes and scents that fills my head...
Ah yes. My head.It keeps coming back to that. Each pathway. Every train of thought. The ways and thoroughfares I wander always end up there with thoughts I am not pepared to think yet sneaking up behind me, going BOO.
I still have not cried. There was one tear, just one, that slipped out gently and slid past my temple to hide inside my ear while I waited, immobile, for them to bring the dye that would brighten up their pictures.
It was not a tear of feeling or discomfort, it did not sting or burn with salt or passion, just dripped down like knowledge and acceptance, a quiet yes that wrapped me in the space I need to gather my resources, find my questions and stop from running, screaming, naked into the night of terror that capers, gibbers on the edges waiting for me to forget that nothing new has happened.
What is now, was yesterday and last week only now I want to have an opinion about it. Sun rose, light may have come through a window, but nothing has changed from what it was. And nothing will ever be the same.
My friends in NY used to hate me when I'd do this. Dismantle moments right down to the heartbeat. Searching for the now that lacks opinion, just observes and labels, dispassionate yet strangely gentle where breath comes in, goes out and I am cherished in the silent pause where nothing happens, nothing changes.
Each moment is a tiny dot but link them all together and I have a line to live by, to guide me forward so i do not flail and break myself upon the armoured walls of fear.
Maybe bacon with those pancakes....
I would like to say thank you to those of you who, reading these blogs, have sent notes and flowers of caring and support. I am working to be open to the lessons in this and two are becoming clear, I need to embrace my need to bend before the storm instead of fighting to face it down, and I need to let others do for me sometimes.
My sister called me last night and offered to come over from St. Lucia to drive for me over the next few days. My immediate response was I cannot ask you to do that. She said, you can, you are my sister and I love you so i said thank you.
And I have just this second started to cry.
I have seen my brain, my heart, my lungs and today I get to see the rest of me. Either that or I will be so magnetized I will spontaneously something!
Yesterday was the eighteenth anniversary of my fathers's death. Last night my whole apartment filled with the scent of his pipe tobacco, a smell I quite dislike, and I talked to him. I spoke of forgiveness, love and fear. I thought of the good things, of the bad, of the balance that is life and living.
Since mid Jnuary I have been struggling to be a grown up while I want to howl 'why me?' Why have I done this to myself? What possible lesson have I set myself up to learn by turning off half of my body?
I don't even smell right any more! Anyway, today i submit to an MRI and for the price it better be a whole body scan not just my head!
I do not know what I hope for beyond some type of answer. I feel overwhelmed because despite my efforts at using my left side and exercising to maintsin the muscles it daily becomes less under my conscious control. I hit myself in the head with the hair dryer yesterday, and even if I watch the keyboard there is no way to ensure my left hand sill hit the rigfht keys, or just the key intended.
There are so many people who are in a far more difficult circumstances than I am. And now I hve a shadow of understanding I weep for the mountains of frusatration if not outright discomforft thst have to bve endured.
So many simple things have become tasks I have to think about. even keeping a shoe on my left foot is a challenge because i do not know when it comes off. And dforget pants that zip up the left side! I spent precious minutes feeling for the tab before i realised I just cannot feel.
Anyway, my dad may or may not have stopped by last night. I asked him to help me be a big girl. to help me through this strange undoing, this taking me down to the bones.
At least my tendency to live in the moment is paying off. I know very well how to put one foot in front of the other, even if one leg drags slightly.
One step at a time.
And there is a simple joy and satisfaction in gettng really caked in clay despite a capacious apron!
Of course potting with one functional hand creates an interesting challenge, and just keeping numb fingers off the wheel and avoiding serious abrasions is just the start of the fun.
It looks so easy and tranquil in "Ghost" Demi & Patrick all aglow and making clay grow tall and elegant.
After the first half hour my vision is partially obscured because my glasses slip and functional or no, both hands are gloved with liquid clay up to the wrist (and sometimes higher) so to push the glasses up means getting them dirty.
Then there is the question of control. Currently my left hand is a passenger rather than an active part of my life despite my best efforts at inclusion. The human organism is adaptive, and my instincts don't agonise over the future, they have simply changed my patterns over time ( amere five weeks)to achieve the most efficient use of my resources.
So sitting trying to pull a pot when one hand is in spasm has a tendency to destroy said pot in seconds no matter how elegant a curve I had achieved mere moments before.
Last week we started work on bowls and I produced two rather wonky looking straight sided vessels, rather like truncated flower pots. Well, they were wider at the top than at the bottom, so almost bowls.
Today I managed three completed pots after eight attempts that went awry or that I cut in half to see just how uneven they were, and where I needed to adjust (if possible)my approach.
So I have three pots with gentle curves and really chunky bases that I will correct next week - now there is something to look forward to, numb fingers hovering around sharp implements held tight against whirling clay! Perhaps body armour!
I have this secret hope that if I don't give in I win and get my functions back to normal - today for the first time my speech slurred, was indistinct. Not good when you make you living with your voice! And I know the secret hope is childish but I also know that the only way to fail is not to try.
I sat at a potter's wheel today and threw three recognizable bowls with a left hand that currently is prone to spastic jerks and spasms and has little left in the way of fine motor control.
If i don't give in, I win.
The sky is wearing shades of grey this morning, blending from battleship to dove to white all rimmed with fire where the sun still dares to stick a finger in the business of the day.
And deep behind the grey is blue, and deeper yet the teeming tracts of emptiness between the stars hang icy black, dark velvet textured with the dust of worlds gone by and yet to come.
March has been a month of being clogged and clumped like whipping cream gone wrong. Pretzel twists have curved the days back on themselves and I have marched in place, not moving yet spilling forth into futures dreamed, imagined, feared and hated. Fantastic images that do not exist outside my mind.
I think perhaps, this is survival. This shrinking down that folds the soul into a seething mass of temper, sulks and rude words coiling on the tongue just waiting for the slightest invitation to spring forth. Fresh water tears at every touch, each word that hinted someone noticed, someone cared, and bitter salt that wracked the body, soaked the pillow when no one offered help I did not ask for or even worse, demanded help from me.
Nothing much has changed from yesterday except tomorrow has become today , yet I have crossed a threshold where I can feel the life beyond the margins of my flesh and wait for it to come to me instead of falling in a headlong rush on nerveless feet to grab at it, clinging to the non existent time that has not happened yet. The time between one heartbeat and the next.
It is not snowing here.
In fact it promises to be a day filled with endless blue skies and a sun like a highly polished brass bowl spilling light down on the vivid purples and pinks of bougainvillia, the yellows and earth tones of crotons and the amazing array of greens from dark to almost non existent.
It is going to be hot. Very hot. And I shall not complain, I shall sweat. Probably change my tank top once or twice. Some people will head for the beach but I will not. I have some editing to do and will head in to the station once I am done.
I have never had a problem with the weather. I used to thoroughly enjoy walking in a blizzard when you could lean forward into the wind and push with all your strength and get nowhere while ice spicules whipped cheeks so much, the cold was lost in the rush of blood to the surface of the skin.
I love to walk through the rain. Once, at a garden party, the skies opened and by the time I had sauntered back to the house my skirt was four inches shorter, a scandal at the time - my goodness I have lived so long in some ways, just moments in others- because knee length was the accepted norm, and for once 'dry clean only' meant do not get wet!
Days tossed with wind exhilarate me and I long to run along the beach on the East coast, sand coarse and squeaking underneath my feet, the tidal pools filled with secrets, spitting foam around my ankles, leaving salt like diamonds on my skin.
It has taken all my years up till now to learn I am much happier when I do not rail against those things I cannot change. Instead, I have learned to test the boundaries of everything to find where there is slack, room to maneuver, and then to change the things I can have an effect upon.
My fingers are still numb and my left hand is so beyond my control at the moment, it might as well be attached to someone else's wrist but I have cut the typos in half by using just two fingers rather than all four. I am changing what I can.
This does not mean I sit with a sappy grin going OM MANI PADME HUM, everything is as it should be and right in my world.
That would be such a whopper! What it does mean is that I will do all in my power to rectify and adjust the situation and once there is no more for me to do, I shall work on being 'okay' with the way things are and get on with my life.
There is absolutely nothing I can ever do to change the weather. So I never even try.
Every now and then I read a book that I consider poorly written. Or see a film that would have benefitted if a third of its length had remained on the cutting room floor. Yet I stick with them anyway, although I am more likely to turn off a DVD than put down a book.
I just finished reading another Alex Cross novel. There was a time when Patterson presented storylines that tantalised and kept their secrets, a pleasant way to relax without much thought on a hot Saturday afternoon. Not so today.
I think my blood pressure went up a point or two as I saw things that the characters, supposed to be such hot shots, did not. And I kept waiting to be wrong, to have been doubleblinded with some unnoticed sleight of words, but was not.
So now I feel a sense of let down, disappointment that the formula approach has taken over so much of what is available in popular fiction. I do not want to have to buy three or seven books to find the ending of a story.
By all means write me several books with characters I love. Let me see progression in their lives, their ups and downs of fortune but do not leave me like a season end finale on TV, waiting for the next episode to find out who is dead and who survives. Or what the villain you allowed to flee will be doing next time.
I might not survive until next season or next book. The moment that my heart beats is the only one I have for sure and I resent my living being put on hold by strangers. I also come the closest I ever get to boredom when reading tales that broadcast the action as if I need a signpost from my bedroom to my bathroom, as if there is no joy in being wrong about who the villain or the good guy is.
I needed to be distracted today, from heat, from numbed and cramping fingers, from a sense of being awkward in my skin because plans I made are going down the toilet and life is happening without regard for what I wanted. And I also have a headache starting up behind my eyes.
Even the blogs are static today. I miss the variety, the mix of voices ranging in all directions and as they move quite slowly it will be a while before the spice of life returns.
It is possible to have too much of a good thing. Let me take my grumpy self away before I get really annoying.
My relationship with religion is varied and frequently stormy and I truly do believe that if the Church ( in the person of one of its earthly representives)had not made some bad judgment calls I would have grown up to be in orders of some kind myself.
I was a child of the gods. Not any particular god, I was a slate waiting to be written on, a sword waiting to be tempered; I was wide open to the miracle of existence.
I could feel a current running through me from the earth that had nothing at all to do with my tendency to electrocute myself from time to time. I remember gazing into a flower and feeling the sap surging in the stem, feeling the stretch of the roots twining around the earthworms in the richness of the soil.
I have never needed drugs to alter my reality; in fact, back in the day, I found a glass or two of wine would let me see the world the rest of you described. Would help me fit the 'norm' I was so far outside without a filter between my mind and other peoples' "this is real".
Just recently I have involved myself in two threads on religion/divinity/god; and today I wrote a poem that will probably offend although that was far from my intention. It puzzled me for a bit. Why am I walking on this ice that is always so thin one is asking to drown... slowly.
I ply around the edges of the forum, brief comment here, a quick hello, a poem or sometimes two most days although the current status of my typing skills has slowed that down.
Mostly I just read and learn about people, how scared they are, how lonely, angry and disillusioned they are, made worse by the knowledge that so often we lied to ourselves. The signs were always there, we did not want to read them, give them form. We want the dream. The winning lottery. If love fades it is time to move on and it is their fault, who ever 'they' are.
For me the truth is somewhat different. Love is meant to fade. It starts hot and fast. Grows and overwhelms, settles into heaven for a while. And then it fades. At which point we start to pick at it, dissect it, find fault and sow the fields of passion with salt and infidelity.
I look around and see the day start with a gleam of sun that swells to the furnace of midday and shrinks down to a gleam of gold, all wrapped in reddened clouds, on the horizon. Then day is done. Night rules. Across the year, even in sunny climes there is a rhythm and a season ; timid spring, brash summer, mellow fall and icy winter.
We begin life as a baby, grow and change, get fast, slow down. It happens in everything so why should love be different? Perhaps it needs to fade, go dormant like the tulip bulbs we save until next season and all we need to do is let it rest, just waiting for the moment when it starts to bloom again, surging up anew to put us in a honeymoon again.
What has this to do with religion/divinity/god?
Nothing at all.
I started there and ended here. I just listened to the rhythms in the ether that surrounds me and let the words come out.
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