January 30 2009

This day ten years ago, in an attempt to have a second child, I got pregnant with cancer. I didn’t know that you could create your own cancer, but you can. Learn something new every day.

We started trying for a second child as soon as the town planning permit had been approved for our renovations. We were cutting it fine but if all went to plan in ten months or so we were to have a big baby, a little baby (18 months apart) and a big brick box on the back of our house. Q. How do you make God laugh? A. Tell him your plans.

We got pregnant in one go. I was excruciatingly tired and spectacularly nauseous, but egged on by the fact that I knew it shouldn’t last more than three months and couldn’t last more than nine. Leo if he was boy, Nina if she was a girl. At 14 weeks pregnant I began to bleed and then came strong, dull, relentless pain. An ultrasound discovered that there was no baby in the first place.

That’s right, no baby.   Yes I was pregnant, but there was baby.

I’d been incubating what is called a hydatiform mole. There are various ways this can occur but chances are two sperm fertilized an egg with the same time. One egg, one sperm equals 46 chromozones and you get a baby and a placenta. One egg, two sperm equals masses and masses of carcinogenic placenta that multiplies at a rate of knows. Placenta produces the hormones that make pregnant women tired and nauseous which explains why every morning I’d been feeling like I had spent the night in a tumble drier. I had the t morning sickness equivlant for triplets.

I was given a curette the following day.

I wrote at the time “This is no tragedy. All you have to do is watch the nightly news to realize that if this is our biggest problem we are pretty bloody lucky.” I was 30, had successfully made one baby and chances were we’d make another, we had just been forced to slow down our hammer and tongs life. We couldn’t try for another baby until the mole (which is a form of cancer appropriately named because it is able to burrow through the walls of the uterus and create tumors elsewhere) had not reared it’s ugly head for nine months.

But it kept coming back. After another curette and see sawing hormone results it was determined that I undergo what would become a three month course of chemo therapy. “Do you want to have a cry?” asked my partner.

“No. To tell you the truth, I feel very relieved.” At least I finally knew what was going on-bliss for a control freak like me.

“And after you get back down to normal we will give you one more fortnight of treatment.” Normal. I had forgotten that it was possible to be normal I had not been normal since the pregnancy had started five months before. And I had been breast feeding for 11 months before that and pregnant for almost 10 before that. I was pissed off that I was looking down the barrel of more fatigue and more nausea and all for what? Stuff all. Some random chromosonal stuff up. Not fair, I’d signed up for a baby five months before, not chemo. Not in my wildest dreams.

This is the best bit. Our renovations started a week after the chemo started and finished a week after the chemo had finished. We had the back ripped off our house in the middle of winter and were existing in three rooms crammed full of all our possessions. No kitchen, no bathroom and portaloo out the front. Both of us were working from home with a toddler, a 30kg dog, no backyard and me having chemo. The winter of our discontent.

I didn’t go into hospital, I had injections every day of every other week. People phoned “Hello tragic cancer friend how’s it all going?”

“Not bad, not bad, keep knitting me that beanie mate.” For the first few weeks I was inundated with calls from loving and (understandably) curious mates “What’s it like?”

“What chemo? Not that bad, you get free biscuits.”

At first I was scratching around for side effects, a little tired, dry eyes and my taste buds seem to have gone on holiday. But as the weeks progressed the accumulated affects really started to make their presence felt; thrush of the esophagus, diarrhea, a severe strep G throat infection, a wicked gastric bug that made me feel like I was passing chili sauce, pleurisy, drastic weight loss and boring old nausea. No, I didn’t lose my hair and I kept working writing and performing jokes for a living, what a laugh.

There were also the renovation side effects; mud trampled all over the floor by us and the ever present builders, plaster dust, incessant jack hammers, drills, bobcats, constant queries from architects, window reps and building inspectors. We had no heating, a frustrated dog, bored kid, nurses turning up in the middle of everything needing a place to wash their hands, neighbors threatening legal proceedings, microwave food, stress from clutter and no space.We had no running water so we had to wash humans and dishes in a bucket.

Renovating! What were we thinking? We just pretended that we were camping.

People constantly offered help. My mum cooked, babysat and did our washing, people turned up with food and invited us over for dinner, our neighbor walked the dog, our mates around the corner even went to the lengths of letting us to go over to their place during the day while everyone was at work and school.

I never got better at receiving but the whole journey taught me to be aggressive about helping. Many people said “Call us if you need anything” and you know what? We never called. It was the people who forced themselves on us who got to help. My mum’s house burned down a few years ago, some people tried to help in ways that she didn’t find helpful but it was the people who did nothing that she was angry and disappointed with.

The house got finished and I six months later I received a letter telling me I could try and have more children. So I had two. I shudder as I look over my shoulder at the three months of building and treatment, it was just one of those things. Life is full of ‘one of those things’. If someone close to you is doing it hard just hop in and help, be an angel and don’t stay long. It doesn’t have to be death, birth, cancer or renovations either, just garden variety flu, melancholy or time deficiency is enough reason to help. When you don’t know what to do, do anything. ‘The best thing to do is the right thing. The worse thing to do is nothing.’ Theodore Roosevelt.

Someone asked my why I haven’t commented on the Adam Goodes thing.

Look, I really don’t understand it at all. I detest football and don’t understand booing ever. When I watch my son’s basketball team I applaud and barrack for all good play. On both teams. Australia is deeply racist. Anyone who needs to be convinced if that is a fucking racist. Booing is considered okay at footy so people can veil their racism with ‘Ah it’s not because he’s black I just don’t like him and that’s what happens at the footy.’

It’s all a bit ‘No offence but’ ‘I’m just mucking around’, ‘Don’t get your knickers in a twist’, ‘Can’t you take a joke’….

I‘M DYSLEXIC. No secret. No big deal. I saw a T-shirt the other day that said Dyslexics Untie! Took me about five minutes to work it out. I love that joke about the dyslexic devil worshipper who sold his soul to Santa. But I would. Because I can.

Two of my sons are dyslexic and so, too, is one of my siblings. Dyslexia has a huge genetic component. It’s estimated that 10% of people are dyslexic yet very few are assessed and given support despite dyslexia being the most common learning disability in children and adults.

After my eldest son was assessed I was appalled at how dyslexia was not dealt with in our schools. The condition is misunderstood and badly managed. Teachers are not trained to pick it up and even if they do, assessment can take up to a year. By that time the child is often crushed by lack of confidence and low self-esteem.

And there’s no tailored program in our schools to address it. Reading Recovery does not work for dyslexics. Weekly private tuition for years is a luxury of the wealthy.

How do I explain dyslexia? Our brains work differently. Basically we see things from an aerial perspective, not in a linear fashion. We process everything at once and our strength is not in details. We can’t just rote learn things, we need to understand them. Dyslexics are very good at being able to retrieve a swag of information from many different domains, which makes us great creative thinkers and problem solvers. But messy cooks. When we learn it’s as if we are looking at a tree and instead of learning from the roots up we learn from the limbs down. Which makes navigating our way through learning to read and spell a nightmare of differing proportions. Some just give up.

Dyslexics see things in pictures. We tend to memorise the shapes of words, guess and take clues from other words around it. Yet if you tell a dyslexic a story their comprehension is excellent. One of our biggest weaknesses is reading aloud; we often sound stilted because our brain is so overloaded.

Dyslexics have difficulty decoding and encoding words, basically sounding them out and spelling them. Dyslexic children often appear quite bright so teachers assume they will just catch up. Dyslexics tend to make it through primary school OK, but as soon as they hit high school they are bombarded with so many unfamiliar words with similar shapes that it all gets too much. Some stop wanting to go to school, complaining that it’s too hard. They are then branded as lazy and from there it can all go horribly wrong.

Our son was captivated by books but struggled to read. Like many dyslexics he was labelled a late bloomer. He just wasn’t getting bang for buck out of the amount of effort he was putting into reading. When we told the school he was dyslexic they were on board straight away.

They gave him a Reading Recovery test and were stunned that he would not have qualified for extra help. The words on the test were all words that he had memorised the shape of. If they had used nonsense words, like turning the word laugh into raugh or tiger into siger, he would have been stumped.

For dyslexic children it’s not a case of working harder but learning differently. Dyslexics need early assessment and multi-sensory, systematic explicit teaching with a focus on phonemic awareness. This needs to be addressed by early intervention and intensive support. It’s the long way round but the short way home. In this world of increased written communication, dyslexic children need a tailored, well-resourced program in our schools more than ever before.

Famous dyslexics: Sir Winston Churchill, Leonardo da Vinci, Albert Einstein, Pablo Picasso, Andy Warhol, John F. Kennedy, Richard Branson and Jorn Utzon, who designed the Opera House. Sure the Opera House was meant to be square but who’s complaining? Also in the D Squad are people like Eddie Izzard, Billy Connolly, Whoopi Goldberg, Steven Spielberg, Muhammad Ali and Cher. Others include Hans Christian Andersen, John Irving, F. Scott Fitzgerald, Gustave Flaubert — all writers, all dyslexics. Writers are not necessarily spellers. Buggered if I’ll ever be able to spell entrepreneur without a dictionary.

Early warning signs are poor spelling, having difficulty rote learning, memorising or following instructions. Instead of following instructions, dyslexics often look at the required outcome and work backwards to find their own way there.

Dyslexia, often called a gift in America, also has some amazing strengths. Not compensating strengths, but built-in ones, particularly in the areas of design, creativity, athletic ability and social skills. We’ll get there, we just take a different route. There is a map, we just need it shown to us. As early as possible.