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Waiting for God

Doreen 

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.

Julie

This entry was posted in living with parkinson’sparkinson’s and tagged yopdyoung onset parkinson’s disease by Pete Langman. Bookmark the permalink.

 

Ze … The New ME or just another Ms.

For much of my life, nothing could match the comfort I felt when I said The OUR FATHER prayer.

P

I

I

Until recently, i unreservedly felt I truly knew my earthly father loved me. Not now!

is this is how it sounded from Jesus’s lips 2,000 years ago? An English translation was given that barely resembled The Lord’s Prayer we know today.

🤪

Ze is the scrabble strategists ally. Yet , not only that.

The gender -less prefix could

YET CONSTANTLY reminded of the limited life I am living/ and that i am to degenerate ever more .. I am never the most TOTALLY DEFEATED, .. I who must shoulder the inadequacy, inefficiency of a system, is bombarded with those who feel the nothing ness , able yet more wretched than I.

I feel love for those who care, they are rare gems.

Fortunately, at this late stage I have two.

I am grateful









Scorpion

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. ”

The Scream

My experience of DBS

I feel the inevitable 3rd hourly, slow creep of invasion, witchy pain fingers beckoning .  The cackling I imagine calling  me back for  punishment.  My proud, strong , capable body shutting down. Grinding to a near halt.  Vertebra shouting revolt at the familiarity that will dictate the level of discomfort or what the common,  non discomfort enduring soul would call .. agony.  

But it is a slippery slope , an ever down wards spiral if I allowed THAT word to take root in my psyche.  Similarly the reverberations of the word PAIN.  Well meaning paramedics have requested disclosure and naming the rogue let loose. 

I accept responsibility. It has been my free choice . I have consciously chosen clarity of mind but pay the price in a currency of pain. My mind has always provided a sanctuary, a place of refuge. I lost that sanctuary completely,  post Deep Brain Stimulation implanted in August ,2013 ( with a redo in March 2014 ) 

 I felt like a poltergeist haunting my brain and body, unable to accept that I. ,Julie, no longer existed. Such were the unfamiliarity of my brains machinations.  

The increasing disassociation with reality, lack of any restful sleep, in addition to ever increasing prescribed Parkinson’s medications, antidepressants and antipsychotics, only served to exacerbate my rapid launch into a constant state of panic.  That and a sense of FURY at the medical world that just would not hear my screams. 

That I had paid $30000 (gap) for the privilege and my private health fund $150000, infuriated me further. 

Raised to swallow sickness, to  set the acceptance face, SMILE,  cook, clean, work, study, teach , accept what a woman must. My eyes perceived a woman to be a needer, breeder and feeder. A woman made the world right.  All could be overcome if one tried hard enough.

Guilt my factory default, I had come to understand this as my truth.  Best I accept blame . 

Deep brain stimulation would work , I would make it so. 

But it didn’t And I couldn’t.

When I expressed disappointment DAY 3 post surgery, to the neurologist responsible for the surgery, I was yelled at.  I was in bed, my head shaved completely, the 35 stapled head wound like a crown of thorns, I was to be crucified . He sat , observing me for 10 minutes then rose , stood beside the bed looking down at me. 

“You, are a disappointment !  You could have been a Parkinson’s pin up girl…   I  had expected you to make an effort , be patient.  YOU  should be grateful to all those who have been responsible for providing the opportunity that allowed you to have DBS” 

My recall of this condemnation is etched ,indelibly .  Slow motion… I see it as if an observer.  I could not comprehend what he saiid but I knew I was to be blamed . It WAs somehow my FAULT 

Of course, it was my doing but how was I to remedy this?  I asked the Neurologist HOW ?  He yelled , “ oh just GROW UP!,” 

At this point neuromodulation commenced.  Electrical current was turned on , sending continuous electrical impulses to the brand, spanking new probes I implanted in my sub thalamus. My eye balls felt that a vice was slowly squeezing them. Obviously, I was being punished.  This was familiar,  I was a bad girl.. just as I had been before… memory of previous brutalisation flooded through synapses 

Dear daughter

From your mum on this special wedding day.

My darling, Chantelle, you and Sam have waited so long for this special day and as the human that gave life to you, I can only ever love you and pray that you find joy , respect , companionship with Sam .

As you took your first breath I prayed , “Bless this baby and guide her to be the very best human being she possibly can be. ” This is the same blessing I still put to the great unknown every night before I sleep.

A few memories are important for such an auspicious occasion.

Dancing, singing and laughing are huge in my memories. I remember Rachel , you and I dancing while washing up after dinner, laughing and talking about our days. Then my arms moved where I told them to and words came out of my mouth without effort or mumble . Now I struggle to break free of my zombi esque reflection. I regret ever worrying about a few extra kilos as my diet is limited to what I can swallow . I look frail. Any suggestion of curves a mere echo of previous voluptuousness.

You have decided that I would not be invited to this special day nor told that it was to occur this year.

I know I can never again look like the mother of the bride in the advertisements. Not the mother you wanted at your perfect day. I never did share your passion for marathon shopping and after 14 years with Parkinson’s , I shake, am in pain , rigid every 3 hours so I couldn’t even if I wanted to.

You, though, are exactly the daughter I prayed for, Chantelle and the first and only grand daughter that my mum, your Grandma named or got to spend precious time with before she died at the very age I am now.

I have come to know .. ME.. Julie Lehfeldt, your mum and she is one heck of a gal!!! I discovered , finally, that some folk are sharks and some whiting, some jelly fish and others squid. I feel more like a dolphin .. recognising the dangers the predators, They abandon no family member .. and there is always time for FUN!

Dance like no one is watching

We convince ourselves that life will be better after
we get married, have a baby, then another.
Then we are frustrated that the kids aren’t old enough
and we’ll be more content when they are.

After that, we’re frustrated that we have teenagers to deal with.
We will certainly be happy when they are out of that stage.
We tell ourselves that our life will be complete when our
spouse gets his or her act together, when we get a nicer
car, are able to go on a nice vacation,or when we retire.

The truth is, there’s no better time to be happy than right now.
If not now, when? Your life will always be filled with challenges.
It’s best to admit this to yourself and decide to be happy anyway.
Happiness is the way. So, treasure every moment that you have
and treasure it more because you shared it with someone special,
special enough to spend your time with…and remember that time
waits for no one.

So, stop waiting

–until your car or home is paid off
–until you get a new car or home
–until your kids leave the house
–until you go back to school
–until you lose ten pounds
–until you gain ten pounds
–until you finish school
–until you get a divorce
–until you get married
–until you have kids
–until you retire
–until summer
–until spring
–until winter
–until fall
–until you die

There is no better time than RIGHT NOW to be happy.

so

To the brave , laughing, sleep loving, shot drinking social butterfly I knew

I am contented , I am happy.

.

Have a wonderful life.

love mum

xx

Let’s get the cliches out of the way …

As Parkinson’s has become the house guest that out-stays their welcome and sitting on my hands is no match for the verocity of the Parkinson’s ‘off’ storm..

Just as it was when I was pregnant … (but that was finite and I got to have a cute , suede headed , baby at the end of it )

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

and

I say ‘No I haven’t .

/though

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.

.