Wander, But Don’t Touch.

aaa.jpgMy 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. I hard every 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, I sat on it and hung from the machine like a swing and I turned so that I leaned forward 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 missing 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 put 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 even born.

This 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 sat silently, 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.

 

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Emotional journeys.

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My blog, The Life Of Sue,  is where I come to write, which is usually fun and sometimes therapeutic.  

Here I go….

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 to the surface.

Emotions can also be a physical experience as we internalise what’s going on, feeling the pain or that drug-like euphoria that an emotion can induce.  I have experienced happiness that’s made me smile until my cheeks hurt, and my whole body has felt like flying or bursting with the pure joy of a happy event. I’ve also felt numb with the sadness of grief, and my chest and stomach have felt stabbing pain 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 is often something done in hindsight, because dealing with my physical feelings and responding to the situation at hand is so painful and thought provoking.  Maybe it’s the same for everyone?

Emotions are usually transient because life doesn’t have a pause button that lets us bathe in the sunlight of a good feeling. 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 my ex-husband and I to live.  The swelling pride of success was a welcome sensation when I worked somewhere long enough to get promoted – and again when I went to university in my late thirties and scored high distinctions bringing me to the realisation that I might actually be smart enough to pull off this ‘educated woman’ thing.  All of these feelings came – I felt them – they left.

Negative emotions aren’t so transient and live inside us, seeping out like a hidden, pinhole-sized leak seeps water out of a swimming pool. Negative emotions can whack you by surprise and live under the surface of your skin as an unwelcome visitor – sometimes for years after the negative event has passed.  Fear, sadness or disappointment can brew inside me – like the slow cooker that I once set and forgot, ruining the contents – and before I know it the contents of my life are slowly being ruined by my simmering negative emotions.  This isn’t special – we’re all the same.

Like the slow cooker, everything on the outside looks fine; but in actual fact everything on the inside is not… and I’m usually completely unaware that anything is even cooking inside of me.  And who knows whether making myself consciously aware of my feelings would even be of benefit?  Somehow negative emotions feel pretty safe locked away where they can’t roll on hurting me or popping up like a tsunami of tears for no apparent reason.  Surely it’s better to just accept that bad stuff happens, shove it down and move along?

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 my ex husband and I from house to house – 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.  This 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.  Most people’s lives have many, many sad goodbyes and my tears were 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.

My mind raced, mostly asking why I felt this way when I’m not moving house, nobody has died, I’m not starting all over again and it’s not the end of an era.  How did I feel?

Feelings of disappointment, tinged with some anger and just a little bit of fear came through and I felt sure it was anger at the muscular dystrophy that’s been slightly annoying and little bit limiting for my whole life for now controlling my life. It’s unbelievable that I can no longer get through much of a physical day without feeling like I’ll fall down; I can’t get my kayak onto the roof of the car – let alone paddle it at the beach, I can’t ride my bike if there’s a slight breeze or little incline/hill, and I no longer go on long walks or deep water swims.

Being honest with myself is still difficult, too, because the above paragraph is general rubbish.  The truth is that getting milk from the furthest end of the supermarket is difficult, holding my arms up to dry my hair means I can’t hold them up again (or reach up, or carry anything) for a day or two. Hell, even sitting in a car tires my muscles! Surely, these are the truths that would make anybody disappointed, angry and 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 general swimming in the pool and ocean. There’s a huge sense of gratitude and relief that I managed to fit all that in before getting to this stage.

Water sports, high grades in university and teaching children has been a fabulous past and I’m only just taking my first steps into my unknown future and adjusting gracefully as I go along.  I’m saying goodbye to so much yet I’m grateful for the chance I’ve had to bite all of those apples.  I’ve achieved so much in my life that this new way of living is surely achievable.

It’s obvious now my tears were indeed related to my ‘moving house’ tears.  I’m actually being forced to move again at a time I had planned (and thought) that I’d set my life up to exactly what I wanted.  This is exactly like being told to stop what I’m doing and start again.  My pride in being independent, productive, appreciated, respected and wanted has been interrupted by my body telling me to leave all that behind and start again.

Writing has brought me to the realisation that this is just a flare up of my “moving house” emotion as I say goodbye to my job, financial stability, the kids, my colleagues, my hopes…. yep… there I go again… a cry baby.

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

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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 things even more and, only half way down the monster hill, I realised was 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 off. This bike was out of control and it had no mercy.

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?

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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 and I 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 obviously better than Mum and Dad’s because mine was the first generation of children who were 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).  I didn’t know about child slavery or many of the other injustices that my girls discussed when I was their age, 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 know 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 I think it’s important not to forget 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.

Grief Train.

My first miscarriage was a bit of a surprise because I didn’t actually know I was pregnant.  I sat in the bath trying to ease the pain of what I thought were incredibly painful menstrual cramps when I suddenly realised I wasn’t alone in that bath. My eyes closed for a very long time while my mind raced with blank thoughts… my eyes opened and I looked into the water with more blank thoughts. My mind was truly empty as it was impossible to comprehend or process what I saw.  Describing what I found in my bathwater isn’t appropriate here.  The decision to pull the plug and watch it all drain away became a silent tug of war between the trauma of what was real and obvious and the fantasy that this was a mistake – miscarriages only happen in hospital. Once the reality of my situation hit I didn’t want to reveal what had happened to anyone because I didn’t know how to answer the questions they would surely have.  One positive my doctor offered was that it’s a relief to know I’m able to get pregnant; which meant that, one day, I will be a mother.

My next pregnancy progressed further than 7 weeks and I was very excited to read up on the size of my baby and how he or she would look from week to week. The trans vaginal ultrasound at 6 weeks showed a normal pregnancy, a lovely heartbeat and I felt safe enough to buy a beautiful pram, some blankets and little newborn outfits.  Pastel lemons and greens were my favourite colours.

At the my 12 week visit my gynaecologist asked how I was feeling and his disappointment was obvious when I said I felt great.

“No sign of morning sickness?” he asked with caution in his voice.

“Not even a bit!” I bragged, naively.

The look on his face told me everything I needed to know.  This wasn’t as good as I had imagined.  He saw my face drop and went into damage control; explaining that some women don’t get morning sickness and I might be one of the lucky ones.

“Yes,” I said hopefully, “I do feel lucky.”

A few days later I walked out of the hospital ultrasound room reeling in shock.  The nursing staff watched me emerge from the little room in tears, sobbing uncontrollably. One nurse came over and sat beside me and, without knowing what exactly was wrong, she asked if there was something she could do.   “A tissue?”  I sobbed.

She sprang from her seat and came back with a whole box, placed her hand onto my back and the warmth of her palm flowed through my crisply ironed work shirt, giving me a sense of warm, energetic kindness.  The next few days were a blur as there were ‘arrangements’ to be made.

It was quite late on the Friday afternoon of the Queen’s Birthday long weekend when I was admitted to hospital for a curette.  The nursing staff spoke gently and with care as they inserted the cannula into the back of my left hand.  They rubbed my forearm and squeezed my wrist gently in the most reassuring way as they spoke about what they planned to do over this long weekend. The conversation was distracting and strangely comforting.  As they wheeled my bed from the pre-op room and into the operating theatre I began to speak to the nurse.

The pre-med warped my sense of time  and I could hear that my voice sounded urgent and panicked. The nurse wiped tears from the sides of my face as I went through my spiel, “This was going to be my first baby and it’s my second miscarriage.  I haven’t had any babies yet please don’t rush through my procedure so you can get away to the long weekend.  Please take care of my womb.”

Before hearing their response – or without remembering their response – I was asleep.

Afterwards, I was confronted with ‘those’ questions:

“How’s the pregnancy going?”

“Any morning sickness yet?”

“Hey Mumma Sue, how’s bubs?”

And my response, “My baby didn’t make it.  I miscarried over the Queens Birthday weekend.”

And then I was confronted with the other questions:

“Oh, I’m sorry…. how far along were you?”
“I’m very sorry to hear…. was it a baby boy or a baby girl?”
“What did you name the baby?”
“Is there going to be a funeral?”
“Did they let you bring it home to bury under a rose bush in your garden?”

I don’t even know how I responded to those questions. That time is just a blur.  A blubbering blur of dismantling the pram and hiding all the baby stuff in a big cardboard box in the wardrobe of our spare bedroom.

My false smile meant that life got back to normal pretty quickly.  The most awkward conversational moments had passed and I entered the phase of quietness; no conversation, no thoughts, no plans – just moving forward one day at a time. In my mind I had began to believe the obvious.  Perhaps I was not born to have babies. Maybe pregnancies weren’t natural for me. Growing a human was too difficult for my body and there was no point in asking why because nobody knew the answer.

My third pregnancy was my blessing.  I wouldn’t tell people until I’d kept my growing baby alive for 12 whole weeks.  The morning sickness was very strong and I threw up through a huge smile every morning for 6 months.  I couldn’t bring myself to unpack the pale yellow and pastel green baby clothes or re-assemble the pram until the 8th month had passed.  I was excited and terrified.

My gruelling 26 hour labour ended with my darling baby girl born at 2.30am on Friday 2 April 1993.  I needed to sleep but couldn’t help but lay in my bed staring through the plastic sides of the crib at the miracle I had finally created.

Some nurses came into my room and asked to “have a look at the wee babe”.  They said they remembered me sobbing in the corridor last year, after my ultrasound, and one had been in the surgery when I’d asked them to take care of my womb.  They congratulated me on finally winning the jackpot. These ladies had been following my motherhood story from the sidelines and I didn’t have a clue.

Every year the Queens Birthday weekend comes along and I’ve thought of the little lives that I had lost.  At first the thoughts were very painful and I found myself crying at no notice.  After a few years I was unaware of any thoughts but I was moody – and then, once I realised the significance of the date, I realised why I was so uptight.

Twenty five years have now passed since that Queens Birthday weekend and I have two wonderful daughters (aged 24 and 20).  I can talk about all of my pregnancies without tears; although I always feel a heaviness in my heart and a strange quietness sweeps over me.  Maybe my grief is like a slow moving train which has taken me further away from the need to cry, further away from the disappointment and anger.  Maybe the grief train is now at a new Station where I remember what happened because it’s the only thing I can do in my role as the mother of two little lost babies.

Neurology

When you create a life for yourself and it’s stolen by your DNA you realise identity isn’t as fixed as you thought it was.

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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, Maree and Rose, 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 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 Maree developed Type 1 Diabetes.  It was a shock because her symptoms were thirst and almost sudden blindness… naturally I figured it was a brain tumour.  Type 1 Diabetes is life long because there is no cure.  Each time she eats food she has to inject insulin into her stomach. Hearing this was like a horror story for us both and I took silent, frozen fright; while Maree took screaming flight… running from the nurse and the insulin needle.

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, Maree 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.  Maree was doing great and 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 time to celebrate the achievements of our Maree because, suddenly, a mystery illness had stolen her little sister’s strength, stamina and planned career.

Young Rose struggled through her final years of high school, downgrading her career goals from surgeon… to doctor… to nurse… to receptionist… to typist as she realised she was getting weaker and weaker.  Finally, she was devastated at having to quit gymnastics.

Rose’s 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 the voice in her head as 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 survive. It feels ironic.  We went through two years of neurological testing; some were frightening tests looking for tumors in her brain and spine, a test for 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 a heart test!

Over these two years I had many silent screams in my head while my face smiled encouragingly at Rose. Upon leaving specialist appointments and tests we sat in the car quite stunned at the results or at our next step. We felt lost and frightened in a frustrating maze of emotions that needed no discussion, we each knew how the other felt.  Sleepless nights haunted me as I hardly coped keeping up with work, specialist appointments 70 kilometres away, medical procedures and normal life. People offered to help but I couldn’t figure out what useful thing anyone could do – besides plucking Rose and I out of this 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 her 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 continued to cry as she spoke.  Her husband is 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 a 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, “Stand up.”  Helping her to her feet I told her things I needed somebody to say to me and I stood listening to myself while I spoke.

“Your husband needs you to help him leave this place with dignity.  He needs this time to know his daughters and for them to know him. Now is not the time to mourn. You will go home and figure out where to go for support, help and strength… and you have a window of time right now to find those supports. Friends, family and professionals can all help you to plan, cope and do this the best you can.  Don’t you dare fall apart now.”

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 that I’m also at a neurologist’s office, and she asked if I was also experiencing the death of a loved one.  This question was a bit unnerving because I had been wondering whether Rose was dying and I suddenly wondered whether I actually was living the same nightmare as this lady.  But this very moment was not about me and I replied: “No, I have no experience in this stuff at all.”  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, Rose 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 Rose simply renegotiates her physical boundaries and gets used to the adjustment. Hers isn’t a story of death – just of a different life.  She has a disability parking sticker for the car but refuses to use it unless absolutely necessary.  She is yet to find her niche in the working world but she forges forward, trying everything possible – just to see how she goes.

Like her sister, this girl is my little miracle.

Last year I took more control of Rose’s specialist visits.  I decided to become the patient, giving Rose a rest from being poked, prodded and tested. My plan was 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 records had been destroyed).  Mum just said, “You just got tired before the other kids.”  My childhood was a time where disability was taken in your stride, which wasn’t a bad thing.  Without normal muscles I couldn’t suckle as a baby and didn’t walk until I was three years old. My body wasn’t normal but it was normal for me. I wasn’t expected to climb mountains but I could walk up a hill.  I didn’t feel disabled – my body just got tired faster than other people.  My life and my body felt quite normal, considering 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, was 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 muscular dystrophy.  The neurologist confirmed that my feeling weak wasn’t me going out in some psychologically-induced, sympathetic weakness with Rose.

But this isn’t about me, it’s about Rose, and I felt we were on to something big here.  An explanation didn’t necessarily mean a cure but it would help her to plan a future, knowing her physical limits.  She had a biopsy but it came back clear of muscular dystrophy!  How the heck can that be?  If it’s not muscular dystrophy then what would it be?  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 understand the implications this has on my grandchildren. The DNA test showed up a glitch right next to Chromosome 6 where HLA types are determined.  The glitch meant that I have a particular type of Muscular Dystrophy, which I won’t elaborate on here because this isn’t about me – it’s about my Rose.

The neurologist and I now wonder whether Rose’s muscle biopsy was a dud – she may actually have what I have.  She has my symptoms (although more severe) and a couple of extra symptoms in her heart, and she has blood pressure issues – but the logic of genetic inheritance says she’s likely to have muscular dystrophy and my Neurologist agrees.

It would seem that my Alien DNA has caused my unique HLA type, which prevents me from ever being a useful organ donor; and it’s also the cause of my weak muscles, which I appear to have handed down to both of my children.

Now we wait to have blood tests for Maree and Rose; looking for the same dud chromosomal pattern in their DNA that says “Muscular Dystrophy”.  But this is a game of patience and I can’t get orders for the test until I next see my neurologist – which is months away.

I lost my best friend of 42 years.

Best friends for 42 years; I lost Anne to her mistaken belief that I’d betrayed her. When I thought I knew my best friend because we’d grown up together and had gone through every joy and pitfall of our lives together – I found out we didn’t know one another very well at all. It’s like grieving a death.

When I was in second grade I met a girl named Anne. We met at school during one lunchtime in 1972, when neither of us had anyone to play with.  We quickly became best friends and that’s how it stayed for the next 42 years.

Anne’s parents had migrated from Yugoslavia as newlyweds in the late 1950s and although her father was university educated in the field of mathematics, he wore overalls to work every day at VicRail; our State train system. He was a quiet and pensive man who enjoyed collecting things, laughing quietly and delighted Anne with his practical jokes. She was his favourite daughter and, looking back, that’s probably because Ann was also a quiet and pensive person who enjoyed little practical jokes.  Her mother was usually focussed on Margaret, who was about 11 months younger than Anne.  Mother and Muggsy were usually snuggled up in Mother’s bed watching TV together, often whispering little in-jokes to one another. Anne’s other sister, Lydia, was six years older than us and had no time for pre-teens, TV or silly parents. Lydia was either out with friends or in her bedroom.  Anne’s family of five lived in a long and narrow terrace house on a busy road; sharing a wall with the terrace house next door. The very small back yard was paved with bricks and the small front yard full of potted plants so there was nowhere for us to play outside. We found our fun up on her roof, where the base of her pitched roof joined with the base of her neighbour’s pitched roof.  There was absolutely  no way to fall down and that’s where she taught me Yugoslavian swear words and we talked about boys and the lives we imagined we’d have as adults. Neighbours in Anne’s Street nodded and waved to one another from their front porch and children played inside. Anne’s spare time at home was spent in cultural pursuits like ballet and piano lessons, reading and writing.  My spare time a home was spent outside playing.

Normally, when we spent time together, Anne came to my house which was a few kilometres away in the next suburb. My street was a No Through Road (in those day it was called a Dead End) so the only people who drove down our street were the people who lived there, or their visitors.  The entire street was our playground and we climbed trees, made cubby houses, rode bikes, kicked balls and delighted in the abundance of time and space we had to be ourselves – away from the judgmental gaze of adults and siblings.  We knocked on my elderly neighbour’s doors and had little chats with them or we just sat on their front fences and talked for a while. Although I had an older brother and two younger sisters (plus five other kids who lived in the street) it was big enough for us all to play our own games without getting into one another’s way.And we often played together as a big gang.  Caterpillars and grubs freaked Anne out and I was always on the lookout for them, to alert and protect her from ever looking at one.  We took care of each other like that.  Anne came along with my family to visit my grandparents, uncles, aunts and cousins and enjoyed these relationships as she had no such family (they were in Yugoslavia).

Anne and I always knew one another’s secrets. In grade five she had a crush on  a blonde haired boy and I had a crush on a dark haired boy.  We had a secret language of special words and specific facial expressions that alerted one another that a crush is nearby.  Naturally we wanted to be alert to this so we always looked good… or cool… or both.

My earliest memory of Anne was as a six year old, sitting on the floor at school, listening to our teacher tell a story.  I was sitting, cross legged, behind Anne and to her left.  She was in the front row sitting next to Darren T.  The teacher’s voice carried a gentle, lovely, soft tone and I have no idea what the story was about – listening to the gentleness of her voice was my enjoyment.

Anne’s back suddenly stiffened and she leaned forward a little, as if trying to get a closer look at something. Curious, I edged across to see what she was looking at and just as I had repositioned myself she let out a loud gasp, then a scream as she scrambled backwards over top of me to get away.  She was screaming and pointing at Darren T’s leg, “A grub! A grub!…”

Darren T lifted his bare knee and bounced himself aside a little, looking for the grub but there wasn’t one.  Mrs McDonald quickly went to comfort Anne who was crying at the fact there was a grub up the leg of Darren T’s shorts.  Poor Darren T never wore underwear  and poor Anne had never seen a penis.

Anne was very innocent in every way and she learnt the facts of life straight after I learnt them.  When we were twelve I took Anne to talk to my mum because Anne’s explanation for where babies came from went like this, “Storks bring babies to the hospital and families go to a big, glass window to select the baby they want to take home.”

Our first day of high school came and I felt so nervous I wanted to be sick.  The relief of seeing Anne there was enormous and we supported one another through every trial and tribulation that ever came along.  Nothing was horrible because we had each other.

The years went by and we finished high school and moved in to a little flat together.  She worked taking care of disabled children and I worked as a typist for the public service. This was an extraordinarily happy year as we both had boyfriends, a social life and our own place to live.  However, we were still young and naive in the adult world – which was seen in the day Detectives and Police came knocking on our door at 6am one Thursday. Pulling the curtain back I could clearly see there were about a dozen men with guns drawn and a ramming device ready to bash the door down – it was a scary sight to two 18 year old girls.  We stood in their clear view, wearing pink dressing gowns and looking at them though our very wide eyes. Anne went to the kitchen, at the back of the flat and said there were more of them out the back window! The man at the door asked if he could come in as he held his identification badge up to the glass.  Still, I was wary and told them I wouldn’t know what a real identification badge looks like – how do I know it’s real?   With the patience of a saint the detective said he would like me to open the door so just he could  come in and check that nobody else was in the flat. Anne and I stood aside as that one person came in and did a quick check.  They apologised and left, going straight on to raid one of the upstairs flats across the courtyard.

At the end of the lease my boyfriend and I decided to marry and Anne went back to live at home with her parents and little sister.  Our twenties and thirties went by and I had moved interstate; but we kept in regular contact over the phone.  Every year we caught up in person and marvelled at each other’s lives, then each other’s babies, then each other’s homes, then each other’s divorce.  Both divorced in our forties, we saw one another more often and admired the women we had each grown into being.  Her recollections of her life weren’t very happy and she felt betrayed by every person she’d ever been in a relationship with – including her parents, estranged sisters, ex husband and her children.  It appeared that I had been the only constant in her life over all these years.

Last year Anne needed to buy a car.  I told her my father had a 17 year old car he was about to sell and she gladly bought it.  I’d been driving Dad’s car around for a few years so I could tell her about all its little idiosyncracies.  A few weeks passed by and my phone rang where I had the most devastating conversation I’d ever had with Anne.

I answered, “Hello?”

Her voice was bitter, “Sue?!”

“Yes,” I replied, “Hey how are you?”

Bitterness changed to restrained fury, “You would already know how I am.  I’m very upset! I’m calling to tell you to never speak to me again! Don’t ring, don’t write, don’t email, don’t knock on my door!”

Of course I was confused and asked her what had happened but she wouldn’t answer; she was convinced I would already know – but I didn’t know.  She hung up without as much as a goodbye and I sat crying.  My daughter asked what happened and I told her, although it just didn’t make sense at all and we puzzled over it together.

I tried to ring Anne back but she wouldn’t answer.  I wrote her an email asking her to explain what had happened because I truly had no idea but she didn’t reply.

My daughter contacted her son and he suggested his mother might be upset because the car broke down the week before and she sold it to the tow truck driver.  I wrote asking why she hadn’t just spoken to me so we could have arranged a refund, this wasn’t worth losing a lifetime of friendship.  She responded angrily telling me that if I apologised for scamming her into buying a lemon and if she sensed my apology was sincere – we might be friends again.

You know, there are so many people who say their “jaw dropped with surprise” and this is exactly what happened to me when I read her words.  I was shocked and devastated that she thought I had schemed and scammed her into buying a lemon.  Didn’t she know me at all?  We’d spent the past 42 years together and travelled through thick and thin like sisters yet she didn’t know that I couldn’t possibly do such a thing?

A few months later I saw The Lemon parked on the side of the road and I approached the driver, an older man who had bought the car for his wife.  He said he bought it from a tow truck driver a few months ago.  I asked whether it had a new engine or any extensive work done to it.

“No,” he replied.  “The tow truck driver bought it off a woman who had cross-threaded the radiator cap, letting the water leak out… and it overheated.  It only needed a new radiator cap and it was good to go.  It’s a great little car!”

A year has now passed and I’ve cried many tears for many hours over losing Anne.  She was my very best friend until the day I found out she wasn’t a very good friend at all.

I lost my life long best friend over a $14 radiator cap.

**Links to my other stories can be found here