As a child, I lived for summer as most children are wont to do. Summer was the season to while away hours on the beach with my bucket and spade, making grand sand castles from my wildest dreams until the tide would knock them down and suck them back out to sea.
I would run and dance and sing in the sun and glide over the waves until a beautiful glow built up on my skin with a million sun kisses spattered across the low bridge of my nose. As an adolescent, summer became all about cold beers on the beach or by the pool, reading, always writing and because we lived on the river, water-skiing (which I dearly miss) and spending all day on the water thanks to Dad’s speedboat.
But as I’ve grown older, and a little more shrewd, I have come to disrelish summer. In fact, the last time I remember going out in the sun and being able to bear it, was about a month before I went on the transplant list. I was in Noosa, was just about to turn 21, and I’d climb breathlessly to the hotel’s rooftop where I’d strip off and bake myself like a Christmas ham. It. Was. Fabulous.
After transplant, parading around the sun with little protection was a no-no. With the medication I was on being cancer causing, I was warned about the heightened risks of skin cancer, though I was more at war with my head about ending up with skin resembling a leather handbag. Suddenly, I was burning through jeans in five minutes and I never wanted to go out into the sun again, and this has – in time – served me well, because I look much younger than my biological age. That, and genetics (thanks Mum).
Not wanting to go out in the sun ended up being a combination of the high risk of skin cancer and after nuclear doses of cortico-steroids, I was FAT. I was fat, and the heat seemed to lash me with an extra sting in its tail. It was a good deterrent and I didn’t need to be told twice.
Maybe I was tougher as a kid; I think we almost always are. Even though the last bell of school would herald the real beginning of summer, I remember wanting to jump and envelope my body in the arms of the coolness the day after winter passed; then I’d dally in the water well into autumn. You have a thicker skin when you’re a kid. You can endure more. You are less afraid. You’re still revelling in the everyday practice of daydreaming, where even though you might be sick and in hospital and your friends are dying, you can dream yourself out of it. At least I could. Dream, read, write. Repeat.
Summer for me now is about mixing litres of glucolyte (sodium replacement therapy) to swig at regular intervals during the day. Or if I forget make it up (which I often do because life simply gets in the way) it’s about gulping down fistfuls of salt tablets and laying in my room with my air conditioning on and then being financially assaulted by my power company in those months where the air conditioner runs most nights.
People who suffer with Cystic Fibrosis lose excessive amounts of salt through their skin. Sodium is the major electrolyte in our body which regulates the amount of water in the blood and tissues, and everyone need sodium for healthy conduction of nerve impulses, muscle contraction and growth. But the CF sweat gland isn’t able to absorb sodium back into the blood. BIG problem.
Because this leaves behind a tonne of salt in our sweat (I can’t count the number of times I’ve been able to dust salt off my face and limbs and onto my dinner), my body finds it difficult to recognise thirst. It also affects our digestive system, making our secretions thick and sticky which is why it can be near impossible to cough up the gelatinous mucous in our lungs when we get infection after infection. Heavy, thick secretions also put us at a high risk of bowel obstructions which are heinously painful, dangerous and potentially fatal. If I don’t have enough salt replacement therapy, I get dreadful fatigue, shocking headaches, muscle cramps, nausea and vomiting. The headaches are the worst. Real head splitters, and that coupled with fatigue can have me laid up in bed for days.
But summer isn’t the only time I have to keep hydrated. I need to replace fluids, though not quite as madly in winter, just as one should wear sunscreen in the cooler months. The thing is, when I get an infection, it’s even more difficult to drink when you’re feeling so poorly that you’re struggling to eat or move. It’s an incessant battle and I have thought about moving to cooler climes. Let’s just say I have a three year plan.
Simply put, if I don’t have enough salt or fluids, I end up with in the Emergency department which sounds relatively simple. Except that it becomes a battle of wills to find a vein for an IV to ‘charge’ me back up. Not so easy. Due to dehydration and my incredibly poor IV access, veins are virtually impossible to find, and this can mean up to eight attempts at an IV. Never less than four or five. When the doctors finally get an IV in, we fist pump and bump (except for me – I have to stay completely still), and all hold our breath to see how long the vein will last. If I’m lucky, it works and I can be resurrected after a few hours or a nights stay in hospital. If not – more IV attempts in my arms and legs. If I’m acutely dehydrated and very unwell, doctors will look at my neck for veins. There’s been more times I care to remember where my head was suggested for an IV, but I think the combination of glares and swear words ensured that the suggestion was never made again.
In summer and winter, I am constantly checking the colour of my urine – and you should too. If my urine is dark yellow or verging on brown, I need to drink at least a litre of water because my kidneys (with the heat and the medication I’m on) are working overtime and the last thing I need is to go into kidney failure. I respect my renal system. My liver and kidneys are the filters of my body that I truly rely on to keep me well, so I don’t drink alcohol. There go the beers by the pool …
And so for me, summer is now about dusk, or at the very earliest, late afternoon when the crow’s nest in the towering fir tree outside my window is empty because it’s cool enough for mum and dad to go hunting for their little darlings. Summer is about the sinking of the sun behind the mountains everyday, shaving off a million degrees from the sky and my skin.
Summer means nights spent naked at my desk and on my balcony as the wind envelopes and whistles around my body after a cool shower. It means night swimming and jazz. Fuck, it’s hot in Queensland today.