The Life Of Sue

Lest We Forget

1982 was the year I swapped my final year of high school for the world of working adults. I was a timid sixteen-year-old and more often than not felt like I should have gone outside to play while the adults talked.

These weren’t ordinary adults; I was the new typist at an army unit in South Melbourne. The 70 members of Melbourne Workshop Company were a mix of military and civilian men ranging from their early twenties to their mid-sixties and two women. I worked in the Orderly Room, right outside the Captain’s office. He had a very rigid military thinking style – which means he had the usual “break ‘em down and build ‘em up” mentality. Next to his office was the Major’s office. He was the Commanding Officer of the unit and shared the break ’em down mentality, though his approach was more underhanded. The way these men spoke to me was awful and these days I’d tell them where to get off, but in 1982 I felt like a child in trouble from the school principal. It took a while for me to learn how to be an adult in a military environment, which is why I feel that sixteen year old children should stay at school.

To my immature and unsocialised mind, the army was all about war there was certainly no war on the horizon, leaving me with the impression that we were all redundant. As conversations about war were always hushed around children I mistakenly believed the last war had ended 40 years earlier, in 1945. Without a thought of Vietnam, Korea the Falklands or Somalia, I figured anyone who had been involved in a war had since died of old age. War was a world away from us at Melbourne Workshop Company in South Melbourne.

The Unit was a highly organised place with painted walkways through the workshop, unwritten rules about who I was (and wasn’t) to call Sir , and where I was allowed to have my lunch. Typical of silly rules that I thought soldiers without a war might make so they felt important. My job was to type up anything that needed typing, which I finished before lunch on most days. It was an easy place to work after learning all their silly rules.

Many of the older civilians at Melbourne Workshop Company had served in the army and, their old military rank or their current position in the public service assigned them to do their socialising at either the Sergeant’s Mess or the Other Rank’s (OR’s) boozer. I was glad to belong to the OR’s boozer because the Captain and the Major never went in there. These places might run differently nowadays, but every lunch time we headed up to our respective boozer where most of the men had a drink or two (or more) with their lunch. Everything was priced so that there was no profit, so a beer pot cost 80 cents while spirits were $1.00; making alcohol the most accessible and affordable pass time. The men spent their hour-long lunch break drinking while playing darts or billiards and talking about the bastards in the other boozer. I’m sure it was the same in the Sergeant’s Mess.

I had no idea that many of the men I worked with had been to war but, looking back, there were obvious signs. The older military and ex-army civvies were rigid in their thinking, drank too much too often, and looked after and covered for each other in ways usual workmates don’t. But, as this was my first job and I had no idea it was unusual.

All 70 took me under their wing, treating me as a daughter or sister and made sure I was included in everything. When somebody swore at the boozer the whole room lit up in protest that there’s a lady present and I looked around for the lady, but there was only me. The room would hush like a re-set button had been pressed, and then the volume slowly built back to normal again, without the swearing. I began dating one of the RAEME soldiers and the Commanding Officer was so concerned that a nice girl like me was with such an undisciplined character that he said I could do much better and posted my Corporal 200 kilometres away. That CO often punished or posted his men away, like he enjoyed having power to shape and direct their lives. Twelve months later the corporal and I married and I found out that he wasn’t exactly undisciplined, he just didn’t tolerate bullshit – which made him quite useless to the army. The blind obedience of 1950s soldiers was being challenged by a few of the other soldiers at the unit, too.

I am writing this on the 11th day of the 11th month; Remembrance Day. And I think back to those older members of Melbourne Workshop Company with the realisation that they had lived through the awful truths of real combat and wouldn’t, couldn’t or saw no reason to talk about it. The wartime experiences of the Sergeant’s Mess civvies showed in the way they walked, sat, dressed, combed their hair and trimmed their moustache. In the amount and frequency that they drank and their ability to cover up their drunken afternoons at the desk, and in their high expectations of others and of themselves in group situations. They snuck military vehicles out on secret missions to the TAB or to take flowers to the wife because he had gone home late and drunk again the night before. It was all very risky workplace stuff, but perfectly normal at Melbourne Workshop Company.

Casualties of war don’t always have a bullet wound.

Jealousy

Ellie buried him alive
It was a deliberate and callous act
And when she finished doing it
She was very matter-of-fact.

She had been quite jealous
That he and Darla had so much fun
Those two had become quite close
While Ellie was a lonely one.

Instead of joining in with them
She stole the little guy for herself
Quietly leading him by the hand
To the back of the yard, with uncanny stealth

She pushed him into a shallow grave
Covered him with dirt and sticks
Then walked away so casually
Her demeanor was so slick.

She had left his hand protruding
As if waving to me for help
As I grasped his fingers gingerly
Ellie gave a protesting yelp.

“Leave him there!” she shouted
But I couldn’t do that to him
Darla would be devastated
Without monkey, her life would be grim.

No, I never told Darla
What happened to Monkey that day
There’s no need to cause an upset
Hopefully Ellie will learn to play.

Ellie and Darla holding hands.

Wander, But Don’t Touch.

My aunt’s house was filled with the cheap and personally precious things that she had collected over her life span of more than 80 years.  The little wooden house was almost new when she and her husband bought it as newlyweds in the early 1940s.  This was the home of my father’s sister and it was my favourite of all the places Mum and Dad dragged me to when they visited the adults.

We children were free to roam and look, but not touch.  My brother always went outside to chop into the log of wood with the blunt axe.  My youngest sister sat on Mum’s knee and my other sister and I roamed separate areas of the house, looking but generally not touching.

Normally I began my roaming at the front door, which was framed by green and clear stained glass window panels and cast a pretty light onto my skin when I stood closely.  I wasn’t a confident child and was usually scared of wandering far from the safety of Mum’s leg; but standing there in the soft, green light with the murmur of adult voices wafting up from the kitchen at the other end of the house felt reassuring and I moved through the house freely.  Floorboards creaked under my young feet and the doors groaned like a haunted house when I tentatively pushed them open far enough to walk through. These were not scary, they were just the normal sounds of Aunty’s old house.

The bedroom on the left had a double bed with a slippery bedspread and I ran my fingers over the shiny fabric many times.  Portraits of Aunty’s grandparents had been painted in the late 1800s and sat on the floor, leaning against the wall behind the door.  Aunty said they had been rescued from a relative’s outhouse a few years earlier, in the early 1970s.

At the other end of that same wall stood a beautiful dressing table with three adjustable mirror panels showing me exactly what I looked like from every angle.  I found myself standing, walking, jumping and making all sorts of silly poses, just to see how I looked from the front, side and behind all at once. My feet stepped lightly and my giggles were whispered because it seemed wrong to make a loud noise in this strange and interesting place where I was trusted to wander and look, but not touch.

Most noticeable on the dressing table was a large glass holding my uncle’s false teeth, which seemed scary because I didn’t know that teeth could come out of a mouth – mine were stuck solid. Leaning forward with my face close to the glass, I noticed they looked quite realistic and wondered how they got out of his mouth.  Near the scary teeth was a cream coloured hair brush with soft bristles and a matching comb. The back of the hair brush had a painted green scene of trees and a river, with a stiff, clear, plastic cover that dented inwards when pushed with my curious finger.

Next on the dressing table was a pretty little glass bottle with curious attachments.  This bottle held my attention for a very long time because it had a bulbous, rubber squeezy thing like the horn on my bicycle, which just begged me to squeeze it.  A tight, cotton, crocheted cover protected the user’s thumb and fingers from touching the rubber bulb when giving it a squeeze. Dangling from the rubber bulb were wonderful long, soft, silky tassels, which always fell into perfect place, like impossibly straight hair always falls straight down into place. That squeezy, ticklish, lush looking bulb drew me in like a magnet and I confess that I touched it every time I thought the coast was clear.  The air that came out of the bottle smelled sweet and I quickly figured out it was for perfume.

Just past the bedroom, hanging on the narrow hallway wall, was my Aunt’s wedding photograph. This was the size of an A4 page and had a simple, fine, white, wooden frame and six or seven people in the bridal party – my aunties, uncle, grandfather and the groom.  The beauty of this item was in the photograph so there was no need for an ornate frame. Everyone in the bridal party looked like movie stars with full length satin gowns that draped onto the floor around their feet like gorgeous curtains. They each had hairstyles like I’d only ever seen on TV and each of my aunties held a small bouquet with thick ribbon dangling underneath – and the bride holding a larger one.  The men were the groom, my Aunt’s older brother, her father and a man nobody now remembers. The men all wore well-made suits with broad pant legs and a flower in the lapels. The old people that I knew them as looked nothing like the movie stars in the photo and I wondered how I’d look when I grew old and wrinkly. I wondered many things and this scene became my fantasy wedding for my entire childhood.

Throughout the house I saw glass bowls and crystal vases on table tops, and on the mantle piece sat a Swiss clock made of glass – so you could see the mechanisms clicking and whirring inside.  I watched large chunks of time pass staring into that little clock and heard each tick during the long pauses Aunty made as she spoke. It was a comforting rhythm in a comforting house.

Off the lounge room was a spare sitting room, which led to the toilet and bathroom.  There, in the sitting room, sat a strange machine that couldn’t be switched on for fear of being discovered for breaking the look don’t touch rule.  Stepping up onto the small platform, I slipped under the thick leather strap so that it circled from the machine to around and behind my body, resting on my hips. I leaned back into the strap, then sat on it and hung from the machine like a swing and after a while I turned so that I stood leaning forward, suspended with it up under my arms so that I didn’t fall over.  Spinning back around to face the mechanism, my thumb rested beside the large ON/OFF switch and I wondered what it would do if that switch was flicked on but couldn’t bring myself to find out.

Through that room was the toilet, which was another curiosity.  A windowless room, the toilet had a black, baker lite switch that had a piece broken off from the top of the switch housing.  I reached up and flicked the switch but my little finger went into the hole and I received a shock that threw me onto my bottom.  Next time I went to Aunty’s house there was some sticky tape over the hole and it remained like that for the rest of my childhood.

Everything was old fashioned in Aunty’s kitchen.  Resting along the top of the hot tap and faucet was a wire contraption with a chunk of hard, yellow Lux soap inside.  I asked Aunty if I could have a look and she nodded.  Squeezing the wire handles together made the small box at the end of the handles open up like a crocodile mouth.  Later, Aunty filled the sink and rapidly swished the wire basket through the water, making soapy bubbles appear.  When the bubbles died down she swished the basket into the water again. This is how she washed the dishes and I’m pretty sure she had been using that wire thing since she moved into the house, twenty years before I was born.

She loved me so her house felt like it was full of love; it had character, and held a life time of memories that comes with age.  Aunty’s wedding photo hung silently in the hallway, watching her children born and grow in that house. The green light that shone through the stained glass at the front door welcomed every visitor into her hallway.  Aunty’s hair had been brushed with that cream coloured brush with the plastic back and forest scene every day of her adult life.

Uncle’s wake was held in that living room with the sound of the ticking glass clock echoing through the room.  Her grandchildren, nieces and nephews all loved her reassuring ways and her calm and logical thought patterns – which matched her reassuring, calm and logical home.

Emotional journeys.

This blog is where I come to write, which is usually fun and sometimes therapeutic.  

Today was not fun – it was therapeutic….

No one escapes the full range of emotions that takes each of us on a roller coaster ride of joy, sadness, anger, fear, trust, distrust, surprise and anticipation.  The thoughts and feelings that come with these emotions are sometimes fleeting and at other times they linger, just beneath the surface, ready for a trigger to bring them out into the open for all to see.

Emotions can also be physical; as we internalise what’s going on, feeling the stab, rush, spike or stupor of physical pain and euphoric joy.  I have experienced happiness that made me smile until my cheeks hurt, and my whole body has felt like flying or bursting with the pure joy of the happy event; numb grief; and the mute shock of disappointment.

Now, aged in my fifties, I’ve noticed that neither age nor experience has made identifying my own emotions any easier. Recognising negative emotions often happens in hindsight, because dealing with my physical feelings and responding to the situation at hand is all consuming.  Maybe it’s the same for everyone?

Life doesn’t have a pause button that lets us bathe in the sunlight of a good feeling and there’s no fast forwarding past the bad stuff. My sixteen year old self enjoyed the rush of excitement as I left school early to earn a wage in the public service. I rode out the tinge of fear as I stepped into every new workplace in every new town the army moved us into.  The swell of pride and success was welcome when I was promoted – and again when I went to university in my late thirties and earned high distinctions bringing me to the realisation that I might actually be smart enough to pull off this ‘educated woman’ thing.  As quickly as these good feelings came – they passed and were filed away as wonderful memories or life experience.

Negative emotions aren’t so transient and can live inside us, seeping out in unnoticeable ways like a tiny crack seeps water out of a swimming pool.  Emotions can whack you by surprise because they’ve been living just under the surface of your skin years after the awful event actually happened.  Fear, sadness and disappointment can all simmer inside us – like the slow cooker that I once set and forgot, ruining the contents – the contents of life can slowly be ruined by simmering negative emotions.  This isn’t special – we’re all the same.  It’s baggage most of us don’t even know we’re carrying.

Everything on the outside looks fine while everything on the inside is not and my negative emotions have always felt pretty safe locked away in the vault of my subconscious.

There’s just one glitch to the shove-it-down attitude.  In the past I’ve found myself crying without knowing why and, over time, I came to notice a pattern to my occasional bouts of unexplained crying.  I mean, when a movie or real life situation involves people moving away to a distant town, a death, saying goodbye or just the end of an era I find myself crying more than anyone else in the room and often I’m the only person crying.  It’s unnerving and embarrassing as people look surprised and worried about me.  My unexpected outbursts of tears actually started when the army moved us from town to town – away from my family at first – then away from my great job, new friends and neighbours to start all over again.

My “moving house” emotion actually covered a range of negative emotions that surfaced each time the army told us to move house. The sadness of saying goodbye, mourning the death of a familiar routine, and feeling like I’d been slapped down as the end of another era passed, leaving a sense of disappointment as I was forced to start all over again with a new neighbourhood, job, routine and friends.  It all felt like a cruel groundhog day. These emotions were only compounded and intensified when I had my miscarriages and said goodbye to my unborns, goodbye to the expected date of delivery and I started all over again. Then goodbye to my marriage of 24 years.  Most people’s lives have many, many sad goodbyes and my tears seemed to be on auto pilot.

Being able to predict situations that might bring on tears obviously meant I could take steps to avoid the tears.  I mean, crying in public only prompts people to ask questions and there’s no answer that anyone could possibly understand. At a funeral of somebody I hardly knew I cried just as hard as their immediate family – that was embarrassing.  Experimenting with mindfulness, deep breathing and meditation before facing an emotion that evoked those tears didn’t help.  They came up from somewhere deep inside me and I never had any control over the duration or intensity of those tears.

These deep, scary tears only slowed when his army service ended and I  settled in my own little house because I was able to settle and heal.  Nobody would tell me to leave. Some situations are best avoided, such as funerals, goodbye parties and people in their early pregnancies so it’s been a long time since I’ve had a sudden bout of unexpected public crying – but today it happened.  Unexpected. All consuming. A little scary and quite confusing.  But there it was – the lid was off my slow cooker…

Today’s unexpected crying popped up when I was driving to the primary school where I teach, to tell the principal that I wouldn’t be returning to work.  Tears began streaming down my face as I neared the car park entrance and, instead of turning in, my car drove itself past the gate and home again.  I sobbed all the way home.

I asked myself, “What, exactly, am I feeling?”

Disappointment, tinged with some anger and just a little bit of fear came through and I felt sure it was anger at the muscle disorder that’s been slightly annoying and little bit limiting for my whole life. Surely, it’s natural that saying goodbye to the best job I’ve ever had would make anybody disappointed, angry and maybe a bit fearful?

But there’s no room in my slow cooker to add anger, disappointment and fear to the existing “moving house” simmer, so I go to my reliable strategy of rationalising.

It’s not like I’m a tragic case. Looking back, my past is filled with every physical thing I ever wanted to achieve: bike riding, kayaking, water skiing, scuba diving, hiking and swimming. There’s a huge sense of gratitude and relief that I can do those things.

Now it’s time to take my first steps into my unknown future and to adjust gracefully as I go along.  I’m saying goodbye to teaching yet I’m grateful for the chance I’ve had to bite that apple. I’ve achieved so much in my life that I can slip into this new, more relaxed style of living.

These are moving house tears because telling my boss that I won’t be returning to work is the same as the army moving us away from a settled life to start again.  A flare up of moving house emotion is expected when I’m saying goodbye to my job, financial stability, the students, my colleagues, my plans… yep… there I go again. Cry baby.

I think I’ll actually be okay now that I understand.

Brace… And Tumble

Speeding down the steep road, my bicycle rattled and shook violently underneath my skinny ten year old frame, threatening to throw me off. Hitting the brakes only destabilised the bicycle more and, only half way down the monster hill, I realised we were still gaining speed against my will. Raising my bottom off the seat a little, I tried to ride with the flexible knees a jockey rides a galloping horse, imagining the damage that could be done if I was thrown to the road.

It was during these thoughts that I found out what would happen, and the injuries lingered for months. An ugly scab covered my entire upper lip right up to the top of my nostrils, resembling a dried booger that I had no hope of hiding. Scabs on each knee, scratch-like cuts to my forearms, handlebar bruises on my thigh, scabs across the knuckles of my left hand and the palm of my right hand, and probably concussion. Thanks to the big scab under my nose, everyone noticed my injuries and their reactions varied.

Some cringed and others congratulated my bravery at taking on such a hill. My uncles laughed with excitement as they imagined the thrill of such a fast ride and, trying to salvage some pride, I didn’t correct them to say that going down the hill at that speed was accidental and gave me the fright of my life.

Now, when my life feels out of control, my fear is easy to recognise as it’s almost the same as that downhill day. First and foremost in my mind is that, once the wheels are in motion, I can really only brace, tumble and see what I’m left with after the impact.

What the heck happened?

Speaking to older and younger people, you’ll notice that each generation says they were born in the best times.  An older person might say the days of their childhood were the luckiest because they had no TV or computers and they grew up as if life was an adventure.  Children of today believe they’re growing up in the best times because of the technology.  A tree can be found anywhere but not everyone has xBox.

The truth is that none of us knows anything besides what we, ourselves, experience and as a 52 year old I look back to quite a different childhood to my parents’ and to my children’s childhoods.  I grew up in the same house in Melbourne that my father grew up in.  He climbed the same trees as I did.  We both rode our bikes around the same neighbourhood, though it was mostly paddocks in his time. We attended the same primary school at the end of our street.  Most of our neighbours were even the same people. Mum was a country girl and had a different life again.

Dad was born during the Great Depression, between WW1 and WW2.   Like everyone else, his parents struggled to put food on the table and life was a huge gamble that didn’t always pay off.  Dad’s father often brought transients into the house for a meal, a shower and a packed sandwich before they went on their way.   I knew all about my parents’ childhoods and how lucky I was to be growing up in the 1970s.  The truth was, though, I didn’t know anything about life outside my street or my family.  I thought my childhood was better than Mum and Dad’s because I was free to play outside, building cubbies, playing cricket, kicking the footy, climbing trees and riding bikes.  Weekends were spent with extended family and we knew everyone in our neighbourhood by name.

My daughters were born in the early to mid 1990s and they have grown through the transition from an active, outdoors childhood to computerised play and the information highway.  Their generation had a lovely blend of inside and outside, old and new; and it was intriguing, exciting and also a little scary for me to watch the changes.

My youngest was aware of homosexuality in primary school and decided to be a Human Rights Lawyer so that she could defend people’s right to live their life as they wanted – and to ensure child slavery and other injustices were abolished.  This may seem a strange thing for me to admit, but I was in my early twenties before I became aware that homosexuality was a thing (and that there was hateful discrimination against these people).  As a pre-teen, I hadn’t known about child slavery or many of the other injustices that my pre-teen girls discussed, either.

My daughters are now in their early twenties and they each love the ways technology enhances their lives, though I still don’t really know what they use technology for or how they even came to know that these apps and widgets exist.  The last amazing thing my girls helped me to discover was Spotify, an app which I can program to play the type of music I like.

The Internet seems to have created a social life that we can participate in whilst alone and it might become important to remember to catch up with friends and family on real life  outings; real life laughter; reminiscing of old times and making plans for the future; taking photos of togetherness; assessing the climb-ability of a nearby tree; the discussion of social change and openness to the possibility of new social norms.

The internet has opened my daughters’ eyes to prejudice, hate, the dangers of smoking, the chemicals in diet soda and that the degradation of our environment by big corporations and households is taking our planet to the brink.  They are informed.

My parents’ childhoods were the best because they saw families and communities pull together to survive tough times.

My childhood was the best because it was carefree and it was mine.

My children’s childhoods have been the best because the Information Highway arrived just in time to make them fully informed and in touch with reality beyond the microcosm of our little family and our little street.  They are armed with facts and solutions for the raw and harsh realities of this life we’re living right now in the fragile planet we’re living on.

The future is in good hands.

Weird Genetics.

When I was in my twenties my workplace had a drive to recruit bone marrow donors for the Australian Bone Marrow Donor Register.  I suppose people in their twenties are at a very helpful age and I wanted to help the sick children to survive bone marrow cancer.  First step was a blood test to determine which of the few categories of HLA Types I came under.  This is a quick chromosomal categorisation, but my blood test had been contaminated, so I was called back to give another sample.  The second sample was also a bad batch and Dad joked with me about probably having Alien parents on our way in to be re-tested – my third blood test and Dad’s first.

Three doctors emerged from their little laboratory beaming proudly, like the cat that had caught a mouse.  Dad stood up and I followed him in his manners.  Dad shook the doctors’ hands as they introduced themselves to him and I held my hand out to do the same.  Taking my hand, the male doctor looked at me directly and paused in silence for a second, before blurting out, “I’m very excited to tell you that your HLA type is a completely new one, never before discovered.  You are the only person with this HLA on earth… at this stage. We can write a journal article about your unique HLA!”

I had questions, “Does this mean my bone marrow isn’t any good to anyone?”  They nodded.  “And does it mean that if I get bone marrow cancer that I can’t get a transplant?”  They nodded again, adding awkwardly that this could change any day if they discover someone in the world like me.  The scientific excitement began to fall from their proud faces as they faced having to deal with the human side of their exciting HLA discovery.

I was a 26 year old genetic mutant and didn’t know whether I should feel special or embarrassed.  We figured it was probably caused by the X-Rays mum had when she was pregnant with me.

Fast forward about a quarter of a century to my mid-forties and I have been married and divorced, and am living with my two teenage daughters and their two dogs. Our lives seemed pretty straight forward just a few years ago.  I was at university finishing my studies in psychology, social science and then primary school teaching.  My eldest wanted to be a vet and her little sister wanted to be a surgeon.  Each of us was capable of achieving our dream.  My eldest enjoyed her daily swim training and my youngest’s passion was gymnastics.  We were all fit, driven, happy and well.

A week after I’d asked my husband to leave, our eldest daughter developed Type 1 Diabetes.  It was a shock because her symptoms were thirst and what seemed like sudden blindness… of course, I figured, it’s a brain tumor. Type 1 Diabetes is life long because there is no cure.  Each time she eats food she injects insulin into her stomach. Hearing this was like a horror story for us both and I took silent, frozen fright; while she took screaming flight… running her escape through the circular children’s ward with no way out.

She struggled with all the awful side effects of fluctuating blood sugar levels in her final years of school and I allowed her to leave before finishing her final year IF she had a plan.  Oh boy – did she have a plan! At just 17 years old, she moved to the city, to live with my sister, while doing a course, which she finished on a Friday. Her new, highly paid job started the following Monday and soon after she moved into a small apartment in the city; I couldn’t have felt more proud of her drive and determination.  Her only problem is that she gets very tired at work. After hours she’s too tired to cook a meal and on weekends she is too tired to go out socialising. We figure it’s just the way of Type 1 Diabetes.

There was no real time to celebrate her achievements because, suddenly, a mystery illness had stolen her little sister’s strength, stamina and planned career.

It was now my youngest’s time to struggle through her final years of high school. Decreasing stamina to get through a school day saw her downgrade her career goals from surgeon… to doctor… to nurse… to receptionist… to typist and finally, she realised she could no longer continue with her beloved gymnastics classes.

Her strange symptoms took us on a four year odyssey visiting respiratory and sleep specialists, an endocronologist, two neurologists and a cardiologist.  Over these years I learnt what was needed of me as her human rights campaigner in high school, her advocate for university, her medical records co-ordinator and as a positive voice in her head when everything dropped away after she’d given it her all.  She now takes a colourful fist full of medication every day to keep her body ticking over properly.  My child, who I wouldn’t allow to drink Coca Cola because of the chemicals now takes chemicals just to keep her alive. It seems so ironic.  

Two years of neurological testing looking for tumors in her brain and spine, motor neurone disease, heart tests and all sorts of painful poking and prodding.  Her heart now beats at 130 beats per minute while she sleeps – and it actually stopped beating during the heart test!

Over these two years I had many silent screams in my head while my face smiled encouragingly. Upon leaving specialist appointments and tests we sat in the car, stunned by the results or at our next step. We were lost and frightened in a frustrating maze of emotions that were based on fear of the unknown and the reality of what she was going through. There was nothing to discuss, we each knew how the other felt.  My over active mind made sleepless nights hauntingly long. I hardly coped with concentrating at work, driving to specialist appointments 70 kilometres away, and finding an emotional balance between medical procedures, test results and the illusion of normal life. People offered to help but I couldn’t figure out what useful thing anyone could do – besides plucking us out of the nightmare and letting us get back to our normal lives.

On one visit to the neurologist a distressed lady came bursting out of the doctor’s room and paced the hallway, sobbing, before falling to the floor nearby.  Everyone ignored her as if she needed some privacy but I couldn’t stand it and went over to sit on the floor beside her.  My hand moved up to touch her shoulder and she sobbed through her words.  Her husband was still in the room with the doctor and he has a degenerative muscle disease – he wasn’t expected to survive the six months to Christmas.  She went on and on talking about how they met late in life, married and had two baby daughters at home, “How can I lose him now?  How can I raise the girls without their father?”

I took a tone of voice that was a mix between my mother’s stern, authoritative voice and my own gentle, soothing voice and said, “Come on, stand up.”  Helping her to her feet I told her things I needed somebody to say to me and I stood listening to myself speak.

“He needs your support.  This is his time to get to know his daughters and for them to know him – it’s not yet time to mourn. You need to go home and figure out where to go for support, help and strength… you have a window of time right now to figure that out. Friends, family and professionals will help you plan, cope and do this the best you can. You can’t fall apart yet.”

These were awfully harsh words and I don’t really know where they came from. She smiled through her tears and hugged me, thanking me for helping her see what needs to be done. She paused as she realised where we were – that I’m at the same neurologist’s office as she was – and she asked whether I was also experiencing the death of a loved one.  

Her question was a bit unnerving because I had been wondering whether my youngest was dying and I suddenly wondered whether I actually was living the same nightmare as this lady. “No, I’m here for something else.”  Twelve months have now passed since I hugged that stranger in the hallway and I often think of her and wonder how she coped with her husband’s death.

Naturally, my youngest has had her dark times, but she continues to hold her head high through every single disappointment. We haven’t had screaming moments like the lady in the neurologist’s hallway, we’ve just gone from one step to the next.  At each set back she simply renegotiates her physical boundaries and gets used to the adjustment. Hers isn’t a story of death – just of a slightly different life.  

Like her big sister, this girl is my little miracle.

Last year I decided to become the patient, giving her a rest from being poked, prodded and tested. My plan was to have my own muscle disorder diagnosed, which had actually been diagnosed when I was 7 years old – though Mum never remembered the name of my condition (and my medical records had been destroyed).  Mum said, “You just got tired before the other kids.”  

My childhood was a time where being different was taken in your stride, which wasn’t a bad thing.  Without strong muscles I couldn’t suckle as a baby and didn’t walk until I was three years old. My body wasn’t as strong as others but I’d always thought of myself as strong. I wasn’t expected to climb mountains but I could walk up a hill and I’m still the same.  I didn’t feel disabled – getting tired isn’t a sickness.  My life and my body felt quite normal, despite whatever was wrong with my muscles. Oh, and my alien HLA type.

First my blood tests were all clear.  Then nerve conduction tests, where 3 inch electric needles were poked into my skin and zapped repeatedly into a muscle, were all clear. My nerves and muscles worked well together.

My muscle biopsy was the one that showed a result and now I know I have mild muscular dystrophy.  The neurologist confirmed that feeling weak wasn’t me going out in some psychologically induced, sympathetic weakness with my tired daughter. I felt we were on to something big here and got a biopsy done for her.  

Her biopsy came back showing no signs of muscular dystrophy, which left me wondering how the heck that could be?  If it’s not muscular dystrophy then what was it?  Why would she have my symptoms but not my disease?

Next I went for a genetic test to map the pattern of my chromosomes within my DNA. I had this done because I wanted to know the type of Muscular Dystrophy that I had, and to understand the genetic implications this has on my children and grandchildren. The DNA test showed up my glitch, a stop codon right next to Chromosome 6 where HLA types are determined. The glitch explained my weird HLA type and also meant that I have the best type of Muscular Dystrophy and it’s only mild.

It seemed obvious that my Alien DNA has caused health problems in both of my children, but further testing showed their problems aren’t the same as mine. Though, I will always know that my genes were the rotten ones. Sorry girls.

Cancer

To start off, I don’t have cancer.

When I was in my late 30s, I went to the doctor about a lump in my right breast. It had been there for about 4 years and I was told it was a normal cyst because it came and went. The reason I was getting it seen to again is that it had grown from a pea to a thumb-shape. Doctor M did the palpation and, when he finally found it, his face went pale. Nothing about this lump was normal or okay. He quickly rang a mamogram service and a specialist to have me seen the very next day.  This wasn’t an easy task and he had to argue with the receptionists, saying he doesn’t want me to wait for after the weekend, this was extremely urgent.

Strange how a protective radar comes down around us when scary stuff is going on.  The doctor’s voice played in slow motion like in a dream, and I had to remind myself that this wasn’t a dream – this was real.  I moved my hand to rub the side of my face, a typical movement I make when I’m anxious, and I noticed my hand also moved in slow motion. If this really was a dream and if I was running – my running would be in slow motion and the bear would catch me very easily.

I sat in silence, waiting for my doctor to finish his phonecalls.  A mamogram and an appointment with a breast cancer specialist – all quickly arranged with his raised voice explaining the urgency.

Within a week I had a bunch of “inconclusive” test results and was on the operating table where the plan was to just cut it out.  The pathology would take another couple of days.

My children were young and I wondered how they might cope without me. Who would raise them, tolerant of their quirky little ways while catering to their hopes and dreams? Unlike the slow motion I experienced in the doctor’s office, these panicked thoughts flashed through my mind in fast motion.  Then they came to a stop.  I felt relieved at the realisation that this was happening to me – not them.  If we were waiting for the pathology results for either of my girls I’d beg the invisible God for the disease to be passed across to me. The fact that I was the one with the lump just shortcut that anxiety.  This made sense and I’d take whatever was coming.

The results came back and showing that I had a thumb-sized, encapsulated mass. The encapsulation was a wall that separated the lump contents from the rest of my body and it was filled with pre-cancerous cells.  The specialist said that if I hadn’t had this removed I’d have quite an aggressive breast cancer to deal with within a year.

I’d escaped.

image from:  commons.wikimedia.org

DAS: A Bank Robber, Drug Addict, Ex-Con, Survivor.

Through writing this blog I’ve come across other blogs, which have introduced me to different lifestyles, writing styes, sexual orientations and cultures. The person I’m writing about today is a stranger to me – I know him only through his blog where he describes himself as an abused child, a drug addict and a bank robber. He also describes himself as a survivor of that life.  He has plans for a better future.

This guy isn’t just a creative writer with a big imagination; his story is real.  Nobody could write like he writes without having experienced the awful things he has described.  His words have been honest, shocking the reader at each of his awful life experiences. He has been a repulsive, selfish, greedy human being in the past and anyone reading his blog would hope he manages to suceed in his quest to be a good husband and an exceptional role model to his daugher.  In fact, I think some of his past actions were so bad he may have deleted the worst from his blog because I can’t find them to re-check the facts.

For this story, I’ll protect his privacy and call him DAS. His social and emotional journey is the focus of my writing today.

The very first words I read on DAS’s blog is that his past haunts him and that, because he can’t rid himself of what he’s done, he is making an effort to come to terms with it. Plunging a needle into his arm used to be his four hour escape from reality and he spent a total of 10 years in a prison cell for his crimes. His blog has photos of him performing a bank robbery and his mug shot. He writes that, when a prisoner is released there is a 78% success rate when he has a loved one give a loving hug and say say he is forgiven. DAS had a daughter and his wife waiting to hug him.

DAS struggles with depression (maybe he always has) and describes this depression as a lazy mental state that has him automatically agreeing to poor choices.  He struggles through a haze of mental laziness which he hopes he can wean himself out of and gather enough strength to recognize that impulsive, automatic agreement to poor choices is his constant undoing. His blog features a gorgeous family photo of DAS on his first Father’s Day out of prison; posing with his daughter and partner – his pride is unmistakable as this was the first Father’s Day they weren’t separated by a piece of thick prison glass.  His blog also features a security camera photo of DAS holding up a bank (not the photo featured in this story) and a mug shot of him, dated about a week after the robbery.  DAS hopes his future self will one day read his blog and see how far he has come.  This is an optimistic person with a future.

One of DAS’ earliest memories was of his father calling him names for not being able to throw, catch or hit a ball.  He has been an abused child, a homeless teenager (actually I think he was 11 yrs old), a drug addict, theif, bank robber, I think he stabbed a man (or witnessed a stabbing), spent a decade in prison.

Out of prison he writes about himself as a proud man who has no intention of ever returning to the life he left behind. Instead of grabbing a needle he now grabs a pen and writes. He works out.  He is now a hands on father, a loving partner, a responsible person, clean of drugs, clear in his thinking, able to reflect on bad times to inform him of better times ahead.  He and his partner have started to plan having a baby. Instead of robbing the bank he recently opened a cheque account with money he earned through an honest living – which was a proud moment and evidence he is successful at turning things around. He says he walks through ife with his head held high and I sense the fog of his depression had lifted. He wrote about standing at a bus stop thanking God for giving him another chance.  This year has been pretty good for DAS.

DAS writes from somewhere deeper than his heart. His words are dictated from the wouds on his soul. Here’s an example:

“All of my yesterdays were bags brimming with lies and deceit that I hauled around…  All of my tomorrows passed with me begging for them not to return. …”   (D.A.S.) 

I can’t imagine the huge accomplishment of turning yourself around like he has – he described his turnaround as ‘hit the ground running’. But by mid-year he could see his life racing back to a place he has worked so hard to escape from. He said that, with his own hands, he destroyed everything he had built and that the man he saw in the mirror wasn’t the guy he believed he was. This was him and he didn’t like it one bit.

He struggled along and had a radio interview about his life and how he had managed to turn himself around; it was a really interesting, honest and inspiring interview.  But shortly afterwards, he blogged that he had an argument with his wife and she asked him to move out of their house.  He’s been back on the streets for three weeks, during which time his lazy mental state automatically agreed to bad choices, bringing him back to the drugs.  He said he sees only two scenarios to drugs…. prison and death.

His blog called for help, but I can’t see how anyone can help him.  He came to a bump in the road and he fell, then he rolled around down there and now he’s dirty.  Getting up again will take strength and resolve.   I responded with a passionate plea for him to be a man and help himself up out of the slum of his past for the sake of his child!  I said he is at a crossroad and he’s taken a wrong turn.  Go back!  Actually, I carried on a little passionately, as I do.  It as devastating to see a good person with purpose and goals wasted like this. Who would be his daughter’s father?  What priority does his wife feel she has in his life when he chooses drugs to apologising and fixing the mess he made at home?

Two days ago I checked his blog to see how he was doing and saw that he’d had a do not miss appointment with his probation officer for a urinary analysis.  Apparently he had missed 4 of these appointments before because he was getting high.  He doesn’t write anything fancy about this and doesn’t create elaborate excuses. He says it how it is and it’s blunt and ugly.

He wrote:

I had a do not miss appointment with my probation officer yesterday. Not my call. Hers. I guess somewhere along the line while getting high or doing whatever it was that I do, I missed 4 UA’s. For those who may not know what that is, well to put it simply, you pee in a cup and they test it for drugs… As of my last writing, things are…I dont know. I suppose better would be a fair description…  Last thought: Sue…thank you for the kick in the butt!!

His partner made a comment to this blog:

Reading these post(s) makes me sad… Things are going to get better, we need to have patience and faith and let the past be behind us. … it’s like we live in two different worlds, the life at home and what is on your mind that you express on here. I love you more than words can ever describe and we will get through all of this pain.

DAS may have grown up abused and alone  He has struggled through life without adequate role models and parental assistance and he has made poor choices.  But the best thing that ever happened to him seems to be his wife.  I really hope things work out for them.

 

Side note:  the image used in this story was found on Google and is not DAS.  
( http://www.ibabuzz.com/tricitybeat/tag/bank-robbery/ )

This Is What Rain Does To Me.

Childhood memories can be beautiful and they can sometimes be quite terrifying.

When constant and heavy raindrops hit the tin roof of my current home I’m transported back to the summer rain of my childhood.  The intensity of rain reminds me of Tchaikovsky’s Swan Lake transporting the listener from gentle, shallow, measured breaths to holding my breath while the brass crescendo echoes through my static, full lungs.  Holding my breath is what a heavy rain storm does to me.

Gentle rain on a warm day lulls me into a relaxed, dream like state; transporting me to memories of my 7 year old self playing bare foot in the street, riding my bike, climbing trees and kicking the footy with the other kids.  The summer rain quickly evaporated from the hot surfaces, suspended just above the ground like a supernatural fog that belonged in the realm of magic and fairies.  Lying on the damp lawn with my chin on my hands and giant raindrops massaging my back, I peered into the mist hoping to catch a glimpse of something mystical.  A fairy rushing home, an elf looking for mischief or just some magical dust that I might accidentally breathe in and get mystical powers from.

My state of curiosity was usually interrupted by one of the other kids riding their bike past me – transforming them to a wizard with steamy mist swirling either side of the back wheel like a magical stage effect.

When I was seven years old an especially heavy downpour of rain,  gale force winds and thunder interrupted our hot, still afternoon.  Mum had the house wide open and the storm hit so suddenly that it sent her into a panic.  She’d worked all day to get the floors clean, the laundry done and other chores. The windows were all wide open but where sunshine had been streaming in to freshen up the house the rain was now soaking the carpet.  Mother Nature had switched the status quo from serenity to mayhem.

The baby was now crying in the pram under the tree and the dogs were barking at the intrusion of rumbling, slamming thunder into their yard.  The commotion of barking dogs, crying baby, loud rain, howling wind and ear-piercing thunder cracks were all so intense that we could hardly hear each other speak. Visibly upset and flustered, Mum shouted for me to get the clothes off the line while she ran around closing all the windows. I stood under the clothesline with my ponytail whipping at my face relentlessly and the clothes on the line hitting against my head and upper body while I wrestled the pegs off. Angry thunder cracks sprung out of the howling wind, piercing my ears in an attempt to chase me into the house.  The fact that just five minutes earlier I was outside playing on a hot, still afternoon made the power of the dark, angry skies even more frightening.

Burdened by half of the washing in my arms I turned and ran into the house to unload but couldn’t bring myself to go back out there.  I called out to Mum, but she couldn’t hear me over the storm.  Pushing past the pram (which was now in the hallway) I found Mum sitting next to my sopping wet bed, crying into her hands.  This was the last window for her to close and she hadn’t remembered that this room had a bed right under the window. My sister’s bed was okay, the baby’s cot was fine, my brother’s room only had wet curtains and my Mum was a wreck.  She looked defeated and I’d never seen an adult cry before.

My hand went to her shoulder in a reassuring way and I asked why she was crying. Although the reason was probably obvious enough, I wondered whether she was also scared by the thunder.  She didn’t answer – she didn’t need to – Mum simply looked up from her hands. I could see for myself that she wasn’t scared; she was angry, annoyed, frustrated, disappointed, defeated… yes, defeated.  She asked, “Did you get the washing in?” and when I told her I got half of it she pushed me away and cried some more.  This is what rain did to Mum.

Isn’t it strange how the little positive or negative moments in time can return so many years later.

Image of lady running past clothesline is from Google: http://theophilus.org/rebecca/images2/clothesline72.jpg

Military image:  “When a mother sees rain: get that washing safely inside now!” @mum_probs