My summer of love

Earlier in the week, someone asked me what I've been up to. 'Reading, writing, stuff ...' But mainly reading and writing, hanging out with my sister and my nephews, working, planning, walking and dreaming. It's true - I'm an abject failure of a social butterfly, although I did actually go OUT Friday night to the opening … Continue reading My summer of love

Trying to breathe when you are drowning

Ever had a newborn baby put into your arms and breathed them in? Like really breathed them in as though it were your last breath? I've been thinking of experiences that trump being high, and this is the most powerful that comes to mind. I have four nephews and was lucky enough to be present (and I … Continue reading Trying to breathe when you are drowning

I am an addict

I posted a rant on my chasing away salt water page earlier today, much of which I've included in this piece. It involves the Cystic Fibrosis community - my community, if you will - and my burning question was this: when will people start taking responsibility for their lives? Why are there GoFundMe pages being created to ask for … Continue reading I am an addict

The day I met my donor

I never thought I'd do it. It's been seventeen years, after all. And even if I did do it, I never believed it would be this hard. Mum and I had talked for years about going into Births, Deaths and Marriages to see if we could find her, but today on my own, I went into a quiet room … Continue reading The day I met my donor

The night I lived again: part three

There is beauty in the ordinary. Waking up, making coffee, washing my hair, going to the post office. All ordinary things made extra-ordinary because I am here to do them. I woke early to watch the moon sink and the sun rise. The east screamed tangerine and the sun pierced the thin veil of sky with … Continue reading The night I lived again: part three

The night I lived again: part two

By the time it was definite that the donor lungs were a match, there would have been at least thirty-five people at the hospital – all friends and family. Even a friend’s boyfriend (now husband) had driven down from uni at Gatton, so he could be there for both me, his now wife and my … Continue reading The night I lived again: part two

My night without armour

May-August 1998 I was in the dying room. You know the one. It's quiet. People slip in and out as though they were never there. Festering in a bed for three months, I had grown tired. My arms were the shape of soft baguettes, peppered with freckles like sesame seeds. Lips, a permanent shade of blue. Colourless … Continue reading My night without armour

(dis)connection

Yesterday was all about disconnection. After having another high-ish white cell count and another blood result that can be indicative of infection, rejection (it's not rejection) or inflammation, my IV antibiotics were ceased because I've pretty much had all my body can take. Because it's been two weeks, my CV line also had to be pulled. After … Continue reading (dis)connection

The trouble with ‘cures’

My good friend, writing peer and all round genuinely awesome woman, Carly Findlay has today written for Daily Life about her experience with false cures and how, at the end of the day, she doesn't want to be cured of her rare and painful skin condition Ichthyosis. Like Carly, I've never wanted to be cured … Continue reading The trouble with ‘cures’

Where was this when I needed it?

Today I found the most amazing resource for people - young people - who have ileostomies and stomas (poo bags). You can read about my experience with my poo bag HERE. Ever so glamorous, though it was really the most harrowing time of my life and I physically and spiritually felt a part of myself disappear. … Continue reading Where was this when I needed it?