The words a parent never wants to hear…
“Your child has…”
It doesn’t matter what your child has. The air is sucked out of the room. Time stops. And blind panic sets in as you realise your child isn’t like the other babies. Something went wrong and it must be all your fault. Denial make its appearance. The first instinct is to fix it. Then comes the defiance and anger. And finally – determination, which is unwaveringly enduring.
My diagnosis was Cystic Fibrosis (CF). It is a genetic disease. Both my parents carried the gene unknowingly and I got both copies. CF causes the (usually) thin and watery mucus in the lungs and pancreas to be thick and sticky, trapping bacteria in the lungs causing infections, inflammation and breathing difficulties and blocking the path where digestive enzymes travel between the pancreas and intestines making it difficult to absorb fats and nutrients from food. It can also affect the liver, reproductive organs and sweat glands.
The life expectancy of a person born with Cystic Fibrosis in the 70s was not a long one. 15 years. If we were lucky, kept up a constant routine of physiotherapy, nebulisers and tablets and managed to avoid chest infections, hospitalisation and lung damage. CF was predominantly a children’s disease, progressive and with no cure.
My parents were bombarded with information and, my Dad particularly, made the decision that the predictions were not going to apply to me. He was adamant we would fight. This thing would not make me a statistic. I would be the exception. The bar was set, the line was drawn and the fight began.
© Melinda McKeon 20 December 2020
My illness is unseen, hidden in plain sight. It is insidious, permeating every aspect of your life. It cares not about dreams, plans or age. It takes over your whole life. Your entire being. It does not say sorry.
My illness takes no prisoners. It will murder you in cold blood. It will overpower you without thought. It will cripple you with no regrets. It will strip away your dignity with glee. It will kill you and there is no cure.
My illness will hunch your shoulders, barrel your chest and club your fingernails. It will alienate you, suffocate you and choke you – both figuratively and literally. It will overwhelm you with regiment, anger you with infections and institutionalise you with hospital admissions.
My illness will break you. You will rebel. You will comply. You will fight. You will give in. You will always give in, in the end. It will change you. It will challenge you. It will alter the direction of your life. It will make you suffer. It will bring you to your knees.
My illness will make you ill. There will be days when the exhaustion is overwhelming. There will be periods when you feel you are drowning in your own body. There will be occasions when you will feel like every organ is failing you. Fevers will cause you to hallucinate, coughing fits will break your ribs and the lack of oxygen will make you feel like your head is about to split in two.
But my illness will not define you. It will open your eyes to so many things. You will be empathetic, sympathetic and compassionate. You will be strong, vulnerable and in tune with your body. You will become a warrior. And you will fight. You will fight until you succumb but it will tremble before you. There will be no other choice.
© Melinda McKeon 20 June 2020
Friday’s Child is loving and giving
I arrived in the middle of summer with my Dad pacing outside the delivery room at St Anne’s Hospital, Mt Lawley after being asked to leave. It was January the 11th, 1974 at 9.20 in the morning. I was in brow presentation and ten days overdue. Dad’s were not allowed to be present if there were any complications. I was pulled out with forceps, leaving a lovely big V dent in my forehead, but otherwise ok.
My parents were taught how to look after me and then sent on their way, 13 days after I was born. I was an unsettled baby, not content unless I was being held. I didn’t sleep well and threw up when being fed. Two weeks after I was brought home, I was taken to the local doctors surgery after my parents had discovered a “rattling” sound in my chest and I was continuously projectile vomiting breast milk. They were told that as new parents, they were just being overcautious and to go home and wait for my cold to disappear.
Luckily, my parents were persistent and went back to the doctors surgery two days later. They were then given a letter and sent to Princess Margaret Hospital, where I was admitted for pneumonia. When my parents were allowed to see me after I was admitted, I was connected to drips and leads that came from everywhere, including my newly shaved head. They were in a state of shock, to say the least.
6 weeks after my admission, I was hospitalised again with another bout of pneumonia. This time I was also malnourished and dehydrated. During this admission, the hospital began doing investigations to find out what was going on. The results came back and a specialist was sent up to see my parents. His findings were nothing my parents ever expected to hear.
© Melinda McKeon 20 May 2020
Sonder – n. the realisation that each random passerby is living a life as vivid and complex as your own.
The realisation that my parents had lives before I came along didn’t strike me until I was in my teens and I started having conversations that weren’t just disgruntled replies and idle chit chat.
They met at Forrestfield Speedway in 1968, two complete opposites. He was a shy stock car driver – blonde, skinny and quiet in his early 20’s. She was a sporty spectator – dark haired, tanned and gregarious in her late teens. They were introduced by a mutual friend and the attraction was instant. They began dating the very next weekend, doing the usual young couple things like the drive-in movies, days out to watch the football and the occasional meal out at a pub. Whether it was just a case of young hearts in lust for a short time or if it was genuine love that was meant to stand the test of time, we’ll never really know. A family tragedy cut the relationship short and this should have been the end of the story…But luckily for me, it wasn’t over just yet.
A night out at the speedway brought our couple back together. Two well meaning brothers accosted our shy, young stock car driver and convinced him to start dating their sister again. It wasn’t long before things were full steam ahead. Our dark haired beauty fell pregnant in May, speeding up the process and the couple got engaged and planned a winter wedding. On June 30th 1973 at 3.30 in the afternoon at a place called Alfresco’s in Perth Western Australia – she in a long white gown with draped sleeves and a train edged in ostrich feathers and he in a hired suit – married and began their lives together.
After driving off in a car festooned with toilet paper, tin cans and shaving cream writing, they bypassed a honeymoon and drove back to the Grooms family home in Raleigh Street, Carlisle. There they returned to every day life – he worked on the trains and she worked in the printing press – and awaited the arrival of their firstborn
© Melinda McKeon 20 January 2020
There is only one stage in our lives when we are authentically true. When we are born. It is when we have no pre conceived ideas or notions to sway us in any way. As we get older, we learn and we adapt. We start to wear masks and participate in some grand masquerade ball.
We wear the mask of the child, the sibling. The mask of the friend, the partner. The mask of the parent, the neighbour. The mask of the student, the teacher. We wear them, we learn to love them. We adapt to them. They are beautiful and mysterious and we go through life dancing with strangers. Some strangers become familiar and we reveal our genuine face to them. Others, we keep our masks firmly on and twirl to the next partner.
We also endure heavy, wearisome masks. The warrior. The survivor. The victim.
I started out participating in this masquerade ball happily. I switched masks when expected, with joy. I loved playing every role. I smiled through it all and lived life to it’s fullest with what I was given. Slowly, over time, I was worn down. I started to feel stifled and choked by my masks. I didn’t enjoy putting them on. But I didn’t enjoy who I had become. I was a muddled version of me. I lost myself. I became so obscured by my masks I didn’t know who I was supposed to be anymore.
Now I am trying to find my way back. I am not wearing masks anymore. I’ve come to learn that life is not a mysterious ball where you hide your true self to wend your way through life. Life is brutal and brittle, untamed and unchartered, melancholy and oppressive, beautiful and tender. It is here to be lived, not hidden away from. I’m here to feel it, believe in it… And I must always remember – life is a dance, not a masquerade.
© Melinda McKeon 20 November 2019
I’ve always been afraid of the dark. Maybe because that’s where my fears hide. In the early hours of the morning, in the pitch black, when I’m trying my hardest to sleep, that’s when my ghosts come out to dance.
My shame, my regrets, every bad decision, every wrong turn. My darkest moments. They twist around me like bedsheets during a bad dream. They ensnare me, threaten to drag me under. Sometimes I surrender and am pulled into despair and other times I can shut my mind and force them back into the shadows.
But my ghosts are always there, waiting for the next dance. They exhaust me. They frighten me. But they are part of me. If it weren’t for them, I would not be who I am today, nor where I am today.
Deep within the shadows lays my salvation. A small flicker of light. So long as that tiny flame endures, so will I. I find comfort there. Warmth and love. A memory, a tender touch, a giggle. Redemption maybe. Relief perhaps. Something to move toward, definitely. Something to tether me. Ground me. Hold me.
So I continue my dance with the ghosts and hope that the spark catches and fills my world, once again, with light and pushes the shadows to the edges, where they belong.
© Melinda McKeon 20 September 2019
We’re all a little fucked up, right? We’ve all had some kind of trauma or something messed up has happened in our lives that made us a little jaded, a little cynical. Or a little depressed.
I’m a lot depressed. I never used to be this way. I used to be one of those girls who was bright and bubbly every day. Now I find it hard just getting out of bed. It happened over time. A long time.
I have clinical depression, anxiety, post traumatic stress disorder, agoraphobia, germaphobic, insomnia and obsessive compulsive disorder. Mix that all up with a big old spoon and you have a jittery bag of meat and bones who sits around crying a lot and worries about how useless she is. I’m highly strung, heavily medicated, quick to anger and lack any kind of motivation.
People say to me, “You’ve had a pretty rough life, it’s understandable”, but it doesn’t make me feel any better. Just because you’ve had a shitty time, doesn’t mean you have to have a shitty life. At the moment, though, everything feels pretty shitty.
I’ve pushed away all of my friends without even trying. I guess I’ve distanced myself from my family too. Even my husband and daughter, who love me unconditionally, have lives that don’t really need me in them. They’ve adapted to me not being here, through necessity, right in front of my eyes.
Welcome to the shit show that is my life. But like I said before, I wasn’t always this way… I thought maybe writing it all down might help me work through it. Or it might just be a colossal waste of time. Who knows. All I know is I’ve got nothing but time…
© Melinda McKeon 20 August 2019