The first of many…
So I thought it best to start from the end. Because I read somewhere that you cant understand the beginning until you had reached the end. So this is me, at my very end.

It is 2016. I cannot recall the month. I am very sick. I have lost around 15 kilos, and I haven’t showered. My Dad and I got stuck in traffic on the way to the Alfred Hospital, but it’s just clinic and they always are running late. I’ll probably Skype Andrew later on in the evening, I usually do that after a hospital visit. It’s hard to coordinate the time differences, but it’s only about 4 or so months to go and I’ll be overseas. I’m hopeful and I’m excited and it’s hard but right now it’s a hospital appointment and I cant think about anything else. I remember the feeling of trepidation and anxiety I would always feel walking up to the lifts. It’s such a bustling place, but I never pay attention to the hundreds of people coming and going. They might be visiting loved ones, perhaps they are about to receive some good news, or maybe some bad news. I feel selfish that I don’t think about them enough.
This clinic appointment is different. Normally I’m shepherded to different rooms after checking in at the front desk by the Cystic Fibrosis team. That’s what I’ve been diagnosed with, since April you see. I usually get called into the Physiotherapy room (“Have you heard of the Aerobica? How much sputum do you bring up a day? In terms of a cup, how full would it get? What’s your baseline?), then the Dietician room (“How many snacks do you have a day? Is that every day? What’s a normal dinner for you?” ) And then finally the actual CF doctor who asks me just as many banal questions, and I answer them robotically and I get spat out with a ‘Thank you for coming’ and a prescription with new medication. It’s like I’m cattle moving across the steel tarmac. It’s always a shove, and move on process. I don’t mind this process at all. I don’t really have to think about anything if I’m getting bombarded. All they care about is when I nod in the appropriate places and answer the questions succinctly enough. Then I can just go home and head to bed. Which is the only place I have preferred to be for 6 months.
But this time everybody is in the one room staring at me. The doctor, physio, dietician, psychologist, and the social worker. They are all sitting in a perfect line and there is one single chair in front of them. It feels like a really intimidating interview, or some twisted version of the Voice. Hospital Idol comes to mind. The sun was lighting up the whole room on this particular day, beaming through all of them so they all became faceless silhouettes. I wonder how they managed to coordinate themselves at once. It is a hospital after all and people are very busy. I think about really silly things at this point. I remember thinking, “I hope they have had a lunch break.” and “How long can Doctors get a lunch break for exactly? Surely given their advanced medical standing, they can choose however long they damn well want. But is that fair? Would people complain? Is their a union?…”
The Doctor was the only person that spoke, and I don’t recall exact sentences so forgive me. But in my recollection the words were short and sharp.
“We don’t think you should complete your studies. We don’t think you should be teaching. Germs. Infections. No overseas travel either. You can’t go overseas.”
I said nothing, but I felt everything. Do you remember the feeling in the back of your throat when the love of your life told you he/she no longer loved you? Or being told in any scenario ‘there is nothing we can do’? Its a sting in the back of the throat, that travels down into the pit of your stomach and stays there. I nodded my head and said ‘I understand’. I said everything I was supposed to say. I walked out and my Dad was waiting for me and I collapsed in the chair next to him. I was 5 flights up in a public hospital in the city and I just wanted to leave straight away. I don’t recall getting to the car from that point on. It was a blur of explanations to my Dad, shuffling of papers. Paying the parking machine. It’s always so expensive, I remember thinking as the receipt spat out and the barrier went up.
I remember we got KFC on the way home, and I ate it just to make my Dad not worry about me feeling unwell. I cried, for what felt like forever. Just long quiet sobs. The roads were quiet. People were at school, at work, going out for lunch with their friends, the cogs in the machine ticking away as life bustled on. But I wasn’t going anywhere.
I thought to myself how I came to this point, and what I might have done to deserve it. I thought of silly things such as “I was such an asshole to my ex boyfriend.” “I never paid Mum back straight away when she gave me money” “I teased a boy in primary school.” I made lists in my head about all the terrible things that I had done that somehow justified me getting this diagnoses, and having this news. I did bad things, so therefore I deserved this bad thing. I wanted something simple to explain it to myself. I would rather it than this awful grey matter that was swirling around me.

Gemma, my sister had Cystic Fibrosis too, and before she died she seemed to cope better than I was. But she never confided in me because we never reached that point in our brother and sister relationship for her to tell me those kinds of things. She was 13, and I was 11. However, she was born with CF and grew up with it and didn’t know any different. I was suddenly, although apparently to no surprise to medical professionals, 27 years old. Sick for most of my childhood and adolescent years, a million exasperated visits to Doctors and specialists later.
It was the year my life was about to begin, but as I nibbled on chips along the Eastern freeway, crying into my sleeve, I felt like it was now the beginning of the end of my old life.
