Monique unfolded the midnight blue Basildon Bond letter. The cursive calligraphy, in silver ink, from her mother’s warm, gracious hands. She had been instructed to read the letter to the friends, family and acquaintances who were here for her mother’s funeral. Between each page a beautiful watercolour, each with her mother’s nom deplume, the scorpion.
Monique’s mother seemed preoccupied as her illness progressed, with her name and reputation and the lenses through which other’s viewed her. The importance given to words and judgment.
She remembers the special shelf for her mother’s creative space. A small desk in the corner of the kitchen. Compartments, in one, her mother’s three pairs of reading and one pair of sun glasses. Over the shelf a wooden plaque with three letters. P. O. V. (Point of View) Under the shelf the special cabinet which held the water colours sets, brushes and calligraphy pens. Always a small pair of silver, filigree scissors. These, used to cut all brand names from clothes, shoes, furniture, any purchased item. As her mother cut the labels her mother’s mantra… I have a name, I need wear no other.
Her mother had been a woman of style, an artist, a teacher, who travelled widely and valued friends and family. Generous, a giver rather than a taker. When a friend was in need she had always, had a room, time, even money for her family yet she discovered no reciprocity.
Bringing her mind back to the church and the present task, she read her mother’s letter.
Thankyou all for attending my funeral.
I presumed I would die at some time, from complications of Parkinson’s disease. Worse than the physical symptoms, though, the abandonment by close family, assumptions and judgements by many of you have said that you feel I no longer exist as the person you once knew. The person I was evaporated.
Branded as surely as any Auschwitz survivor.
That I survived,
At times hanging by a thread.
Is a wonder.
That my spirit thrived
Is a bloody Miracle !!
Suddenly, behind Monique, a woman shuffled in from the rear door.
The woman hugged her daughter and turned to the audience.
Though frail, she shouted,
“I was, always will be … the women with the sting in her tail… and what a tale I have. ”
My door ajar, a straight-backed woman’s shadow steps into the still, musky darkness of my bedroom. Though the room is where I sleep, it is not my home. It is called an Aged care facility. I have become one of those waiting for God. Recently, though, I am doing more seeking than waiting. The shadow’s name is Doreen. With her kind eyes, brushed bob, ironed night gown and red fluffy slippers; she could have been the actress appearing in a Mothers day advertisement. Neither Doreen nor I live the fairy tale life that seems to be some other women’s reward. Perhaps, that only applies to me, as Doreen appears content in the world she occupies. Dysphragia relates to the deterioration of ones swallowing reflex. The muscles also cause problems with speech. This condition answers Doreen’s question. Why a seemingly younger, older, woman is living in an Aged care facility. I also suffer from the same condition but as yet it is not complete. I was diagnosed with Early Onset Parkinson’s Disease at 45 years old and l am now 56. Athough I have children, they have busy lives. I did ask if the three of them would share my care, but they all answered that it was too onerous a task. My youngest Rachel, a 21 year old University sturdent gave a more honest answer. ”I want to remember you mum as you are and were, not as you will become.“ I have looked at myself in the mirror any number of times. i see a thinner, older, greyer me but still me. At this very point in time I am memorable rather than ordinary. Doreen, no doubt has her own story but I am content to know her here and now. She has a daughter who visits, speaks with a raised voice. The daughter does not recognise that she diminishes herself and sounds pathetically patronising. In my mind I readied myself for the conversation with Doreen by imagining a cartoonist’s talk bubbles, heavy like cow udders. Within Doreen are sensations, I imagine her hands softly squeezing forth sounds that make sense to her and somehow to me. Not words but intuition, fears, happiness, questions. I have been a writer and reader all my life. As my speaking ability leaves me, I am left with my senses and I see that words, trap and lock sensations away in boxes of labels. I also suffer dysphragia, however, for now only a couple of hours each day. As the dysphragia increases I feel relieved. The need to explain, find the most appropriate words unnecessary. I need not concern myself that i might offend anyone. Doreen holds a bra to me as a gift. As the movement range of my arms diminishes I can see no need to wear any more than is necessary. Doreen did not offer me the underwear because she felt I offended but as a kind hearted gesture because i had few clothes and no bras. I thanked my fellow resident, with a hug, she articulates unfamiliar sounds, smiles with a concerned expression, turns and shuffles back to her room.
Short term Weather forecast for Investigator Strait, the familiar radio news-weather bulletin cracked the night darkness.
Six am, Jeff pressed the alarm OFF switch, checked the fishing/weather conditions and cricket score, pulled the sheet and blankets tighter around him, stretched his legs.
Rose stood, she had sat on the oak dining chair, in front of the fire since waking at 3am for her medication. The woollen blanket, once Jeff’s father’s, pooled at her feet. She walked to the spare room, pulled on woollen tights, Levis, black vest, long sleeved tee shirt and hand knitted jumper, entered Jeff’s bedroom cave, heavy, with the detritus of unwashed male, (a sprinkle of flatulence), kissed his forehead, asked if he wanted tea now and left him to dress.
As she opened the curtains, Jeff half croaked, half spoke,
“Just checked the BOM. Look’s like the bloody wind has picked up.”
Rose considered the calm of pre dawn against the hustle, bustle and noise of reality.
Jeff tossed wood on the fire, and stamped his steel caps loudly to extinguish an escapee fire spark.Rose had been Jeff’s deckhand for just two years. At first it did seem amusing that she, a 54 year old, ex-Special Needs teacher of 30 years experience, could step up and do the tasks required but this was initially out of sheer necessity and then became something akin to how she felt when lost in creating the colours, textures, layers of her paintings.
Using a kilometre long rope with 250 baited, stainless steel hooks they caught mostly gummy shark. A 24 foot fishing vessel had room only for the Skipper and one deckhand. On those days when shark were plentiful, the ice boxes overflowed with the headless, shark carcasses, and the deck of the boat resembled levels 7 to 9 of Dante’s inferno (if sharks had a hell), Rose had little time to ruminate.
When asked where they went, Jeff merely answered,
This was the Southern Ocean where the precipitous gorges of a massive canyon system finally bottom out onto what scientists call ‘The abyssal plain’. Each gorge large enough to swallow America’s Grand Canyon whole. It is not known what lives there, though slices of soil samples have offered up some secrets of Australia’s climate over 250000 years.
The winds picked up faster than had been anticipated and Rose was finding it difficult to follow and drive the course through the oncoming wind and swell. Finally, Jeff made the momentous decision to cut the line.
He turned the boat, headed to the buoys which indicated the origin point of the longline. As they reeled in the line, the body emerged, bloodless. Not a sea creature, a human male who had met his end violently but was then stamped with the brand of the ORB, a tattoo on the corpse’s ankle, just like the others.
Rose knew the ominous warning, as every local did.
Let’s get the cliches out of the way …
EVERY ONE has a pearl of wisdom about Parkinson’s
- They say ; ‘You are so brave. ‘
- (I say/ think :Thank you but what would you suggest ? How does it look to NOT TO BE BRAVE ?I have no choice )
- They say ;My great grandmother, second cousin ‘s , once removed on my mother’s side has ‘that’ too.
- (I think : You don’t want to hear, I will shut up and wait this out)
- They say ;Alzheimer s is such a terrible disease.
- Yes it is but Parkinson’s is not Alzheimer’s
- They say ;Have you tried cannabis?
- I think: Oh if only I had a $ for each time I was asked that.. 14 Years times at least once a day
I say ‘No I haven’t .
of course I have.
…. and I if I am to face a dragon , a fierce, me eating dragon.. every three hours .. I want to be fully ME.