Day 8 | Transition of Care
The team envisioned this ‘transition’ would take several years, but they didn’t factor my Mum into the equation. On my next clinic visit, I caught the bus to Subiaco, then walked to the hospital. I waited in the clinic for my turn, which went smoothly until they asked for my Mum. “She sent me on the bus,” I said. To say they were gobsmacked is an understatement. So the doctors rang my Mum, but Mum put them in their place. “This is Sandi’s disease to manage. Not mine. She seems to have a handle on everything.” My Mum had her reasons My Mum had witnessed friend's children with CF go rapidly downhill when they hit adolescence, mostly due to rebellion and non-compliance. She hoped that by handing me control, I wouldn’t rebel quite so much. The added bonus was that when I left home at 18, she knew I’d been managing my health for four years, so my health management wasn’t something she needed to worry about. As a result, I’ve never been shy about advocating for my own health. 31 Days of Cystic Fibrosis Bonus FactI’m not going to lie and say I was perfectly compliant all the time. At the time the CF diet was still low fat, and I had a rather large dislike to the powdered milk I was supposed to drink, so I would wait until nobody was home to hop into the full cream milk. I wasn’t smart enough to adjust my enzymes accordingly back then, so I spent many hours on the toilet as a consequence of my actions. Some mornings I would skip my physio and say I hadn’t or just lay on my physio table and read. My first few admissions were a direct result of taking these shortcuts — a lesson perhaps not swiftly learned, but in the end, learned well.
Day 7 | His Words Labelled Me As the Kid Who Was Going to Die
My only option was to put my head down, keep working and try my best to stifle the cough that threatened to erupt from me with every breath. I knew what Mr. Hort said was more than unkind. It was wrong. I didn’t know about disability discrimination then. It might have been my first experience, but it wasn’t my last. Talking the Talk One of the Year 7 boys took me aside. He gleefully announced that Mr. Hort had delivered ‘the lecture’ — the one about how they should be extremely nice to me because I was dying. My heart hammered in my chest because I knew precisely the talk he meant. At the start of the year, Mr. Hort told everyone in graphic detail how to be nice to a boy in Year 4 with cancer. Some of the kids had been nice, but most avoided him, worried that cancer was like cooties and they would catch it. The fact that I was dying wasn’t new to me. I’d known I was living with an expiry date. Long before CF had an official name, an old wife’s tale foretold that ‘the child whose brow tastes salty when kissed will soon die’. I’d always been open with my school friends about having CF, but the specifics were on a need-to-know basis. They knew I took tablets, and although I coughed a lot, I wasn’t contagious. But dying? That was something I hadn’t voiced aloud to them. Now the information was out there, and school was no longer a place where I was a normal kid who coughed a lot. Now I had a label. I was the kid who was going to die. And it was a label that followed me through to High School.
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Written bySandi Parsons - Cystic Fibrosis Warrior. |