Let’s talk about Joe. Its been a while. I take down my cuttings folder and find a piece I wrote for The Standard soon after he was diagnosed with Type 1 diabetes in January 2009. There he is all blond and curly-haired and four, smiling through the yellowed newsprint in a striped t-shirt under the headline “A Cure For Joe”. I’m behind him, sitting on the sofa wearing a terrible pair of jeans and a forced smile.
I read through it for the first time in nine years and surprise myself with tears. The type that spill from your eyes and drip silently from your chin. I’m an infrequent crier – we’re talking years between bouts – but this bit got me: “‘When I’m five…’ He put his hand up and spread his fingers out. ‘I’m going to take the blood tests and zappers (injections) back to the doctors. When I’m five.’”
He never got to take his injections back, nor do I now believe he will ever be cured.
These days Joe has a pump, about the size of a small phone, that feeds life-saving insulin into the top of his backside through a cannula which we change every three days. For a teen, it’s a particularly humiliating procedure. His skin there is a patchwork of tiny round pink scars and glue from the adhesive that only nail varnish remover can truly take off.
Every two weeks we jam another sticky sensor into the back of his upper arm which is swiped with a scanner to give his blood test readings. We should be grateful we’ve dispensed with squeezing blood from his fingertips seven times a day.
So here we are, Joe at 13, attached to two medical devices 24/7 and unable to eat anything without calculating the carbohydrate content. (Which obviously he often doesn’t do).
No wonder he’s so furious.
He used to leave long I HATE DIABETES letters for me by my bedside table. Now he just slams doors, screams “Go away!” and when he really wants to upset us, he’ll throw stuff out of his room, including a final missile – his pump. I’ll often find it hours later it in the corridor, amid the chaos, with its 23 inches of flexible tubing quietly depositing insulin into the pale blue carpet, while the sugar levels in his body skyrocket.
I’ve tried reasoning, which as most mothers of teens know is an entirely futile process. The truth is if he doesn’t control his blood sugar levels he will damage his nerves and blood vessels and the organs they supply. Important ones, like his heart and eyes. Amputation of limbs is common later in life.
But this is a boy whose head is filled with dancing and music and Snapchat. I might as well try to explain Brexit to him. “I don’t care about my diabetes,’ he regularly tells me, defiantly. Him and probably the other 29,000 children the UK who live with being prodded and asked what their blood levels are all day long.
At Christmas I bought a diabetes cookbook which I stupidly put in his stocking. (We also bought him a watch that buzzed to remind him to put his insulin in but by Boxing Day it had mysteriously disappeared, into the bin no doubt). Anyway this book was written by a terrifying South African mother of a young diabetic who feeds her family a strict low carb diet. “We believe in lots of fibrous veggies. We do not buy takeaways. I bake all the bread, wraps and pizza bases using low carb flours like almond flour.” The children were horrified, especially his 16 year old sister who announced she hated “almond and coconut flour.’ I fed them flourless cream cheese pancakes on day one and then gave up, after Joe poured honey all over his.
Wrestling control of this disease means possessing organisational skills on a par with Mary Poppins. Not a 13 year old boy. This week’s tally of Joe’s lost items include a PE shirt, his Oyster card (mistakenly thrown into a bin on Ladbroke Grove – don’t ask) and his umpteenth bank card (literally two days old). He would misplace his blood sensor scanner so often I have now superglued a tracker onto it.
I’m writing this at his new desk overlooking our street, which of course he refuses to do his homework on, preferring the floor. To my left is a collage of pictures he’s recently downloaded from Instagram and stuck on his wall. Two catch my eye. One is of a pile of pink sachets that says ‘sugar’ on them. Another reads: “All we do is think about the feelings that we hide”.
They aptly sum up teen Joe today. He increasingly shuts us out of his world and his pockets invariably overflow with contraband crisp and sweet packets. Who knows all the feelings he hides? His emotions swing between clinging to me on the sofa and whispering “Please don’t die”, to squealing “What a luxury mum!”, having picked him up from school when it was raining, to hissing “I hate you” with eyes ablaze. The latter I still find shocking, as neither of my other children dared utter those three words.
But there are many things that still shock me about living with a child who has a chronic medical condition. I’m surprised after all these years how it continues to occupy such a dark place inside me. How deep the sadness still is. How as a mother, I can neither fix it nor protect him from it. And how few people or even close family ever ask how Joe is. Because Type 1 sufferers invariably look fine, this is a pernicious disease that goes unseen and largely unsupported. And yet our family life is firmly divided into the carefree years before January 5th, 2009 and everything after.
I used to be hopeful of a cure. I cycled to Amsterdam, my husband swam the English Channel, we all still jump into the Thames for the Henley Mile every July to raise money. But I’ve grown cynical of Big Pharma’s commitment to finding a solution to a health problem that is so hugely profitable. (The NHS spends £14bn treating both Type 1 and 2 diabetes, almost one tenth of the total NHS annual budget).
So there, that’s the end of my living-with-diabetes diatribe. In another nine years time Joe will be 22, I’ll be thoroughly grey and maybe medical advancements will have moved on a little.
Then perhaps, just perhaps, we won’t need to talk about Joe anymore.