Just before the summer holidays, my daughter Laura and I were lucky enough to be invited to tour some of the research laboratories of Southmead Hospital. The purpose of the tour was to see at first hand some of the work being co-funded by the JDRF to search for a cure for Type 1 diabetes. Regular readers of this blog will know that Laura was diagnosed with Type 1 diabetes at the age of three, a few years after Gordon, my husband received his own diagnosis of the same disease.
JDRF funds a lot of research projects all around the world, and by chance some of these happen to be based in the hospital that helps us manage Laura’s diabetes. It’s also the hospital in which she was born. So there were lots of good reasons to go along for a look behind the scenes, even though the tour happened to fall the day before we were about to depart to Greece on holiday. I’m very glad I made the slightly reckless decision to abandon our packing and go for it!
What We Saw on our Tour
Accompanied by our regional JDRF team, the lovely Lee Newman and Danielle Angelli, we were shown round the labs by Dr Kathleen Gillespie, a researcher in molecular medicine with special interest in the genetic mechanisms underlying immunity. Apparently 50% of the occurrences of T1D are thought to be genetic-related – although it’s by no means straightforward, as there are incidences of identical twins, one of whom develops the disease and the other doesn’t.
Dr Gillespie introduced us to her cheerful and welcoming team of staff who have dedicated their careers to amazing projects investigating the prediction and prevention of the development of Type 1 diabetes. We toured a series of small laboratories, each with a special set of expensive machinery – but the machinery would be worthless without the intelligence and imagination of the extraordinary staff who operate it. Their kit included some less costly items that you’d find in any kitchen, such as fridges and microwaves. When Dr Gillespie showed us how to extract DNA, she did so on a kiwi fruit!
“Our work does look a lot like cookery sometimes,” said Dr Gillespie. “People who are good at cooking are usually good at lab work too!”
How the Work is Funded
Every research project that goes into the jigsaw of the search for a cure has to be funded separately, in blocks, with submissions made to fundholders in order for the work to continue. The tour made us all aware of the importance of raising funds for the JDRF long-term, so that their work can continue.
We all came away motivated to work harder to raise funds and awareness for JDRF. We were also inspired by the imagination, creativity, positive attitude and dedication of Dr Gillespie, her team, and their equivalents around the world, for helping bring the cure for diabetes ever closer.
My Book Launch in aid of JDRF
This November, to mark World Diabetes Day, I’ll be launching the paperback edition of my book Coming To Terms With Type 1 Diabetes, to make more widely available the ebook that I published for WDD last year. A new chapter will be included entitled “Diabetes Is Always With Us”. If you’re within reach of Bristol and would like to come to the event launch at Foyles Bookshop, Cabot Circus, on Thursday 13th November, the eve of World Diabetes Day, please send me a message to reserve you a place at the event. I’ll also send you more details of the launch.
For more information about the JDRF, please visit their website: www.jdrf.org.uk.
(A post written to mark the seventh anniversary of my daughter’s diagnosis with Type 1 Diabetes)
Getting ready to celebrate my daughter Laura’s 11th birthday in 13 days’ time, I can’t help remembering that seven years ago on this day, I was hoping that we’d be out of hospital in time to celebrate her fourth birthday party.
What were we doing in hospital? We’d been urgently despatched by our lovely family doctor, Dr Mather. She’d alerted A&E (aka the Emergency Room) at Bristol Children’s Hospital to expect our arrival.
It was imperative that we were seen straight away to reduce the chance of Laura becoming dangerously ill.
“Are you in a fit state to drive?” Dr Mather asked. “If not, I’ll call an ambulance to blue-light you there.”
With adrenalin surging from the shock of the diagnosis, we were almost in a fit state to fly there, Superman-style, to save our baby.
All Change with Type 1 Diabetes
That was the start of a whole new way of life for us, accommodating the daily need to do things that fly in the face of maternal instinct:
to stick needles in in my child to deliver life-preserving insulin
to prick her fingers, lots of times, every day, to draw blood to test it was neither dangerously high or low
It’s a balancing act, always, 24/7, 365 days of the year. Until a cure is found, there’s never a day off, because if we stopped doing those things, she’d be dead within days. Managing Type 1 diabetes is not for the faint-hearted. But being faint-hearted is not an option.
Seven years feels like it should be a magic number. It’s a special anniversary when people are meant to become suddenly desirous for change or take off in new directions in search of freedom.
There’s no magic here today, except the evidence, as every day, of the wonders of modern medicine and the compassion of our NHS (National Health Service) that supplies us with the resources we need to keep Laura alive.
Another Sea Change
When Laura was diagnosed, we were just getting ready for her to move up from playgroup to school. That’s enough change to challenge any family without the complication of serious illness, but hey, when it’s your kid, you deal with it.
Now she’s poised to move up to secondary school. Next week, as her final fling at the village school, she’ll be doing her SATS exams – the tests that the government imposes on every child in Britain at this stage. The school has been preparing the children for SATS since January, and the stress of SATS is bad enough for children (and parents!) who don’t have special health care needs.
But for Laura, she’ll have the added challenge of taking exams while trying to keep her blood sugar level. Stress can have two effects on a diabetic – it can send them very high or very low. Either state is not ideal for sitting exams – it can make you feel faint, drunk, angry, scared, tearful. Or it might have no effect at all. Trouble is, you don’t know how it will affect you till you’re there.
The supposed treat of a class breakfast in school at the start of each examination day adds further complexity. Moving away from her normal breakfast routine adds risk: if we miscalculate her insulin dose to deal with whatever she chooses there for breakfast, it could scupper her blood sugar for during the exam. But we don’t want to stop her from going to the breakfast, because it’s important for her emotional and psychological well-being not to feel different from her classmates – another potential source of distress.
Fortunately Laura is the most laid-back person I know.
“I’m not worried about SATS,” she assured me yesterday. “I think doing tests is quite fun.”
She’ll be fine, I’m sure. She’s bright, she’s thorough, she has a strong work ethic. She’s not spending the weekend worrying about her SATS – she’s completely absorbed in setting up a Eurovision Song Contest final for her cuddly toys.
Yes, she’s doing fine. But I still wish we could ditch the diabetes, seven years on.
In November, I’ll be launching a paperback of the ebook I published last World Diabetes Day, to raise funds to search for a cure. All proceeds are going to JDRF, the leading charitable funder of Type 1 diabetes research. If you’d like to read the e-book in the meantime, it’s available exclusively via Amazon on Kindle for now, wherever you are in the world. (More info here.) If you’d like to be alerted via email when the paperback is available, please sign up for my mailing list here.
“Some of SilverWood’s many authors have come together to share a variety of articles and items of interest on their blogs for your enjoyment.
“There are some lovely giveaway prizes, and – to stay in keeping with the Spring and rebirth theme at this time of year – some colourful Easter eggs.
“Feel free to collect the eggs, and use them where you like. They were drawn by SilverWood author Peter St John who writes the ‘Gang’ series about a boy who was evacuated to a village near Ipswich during WWII. Meet Peter and his characters on the Blog Hop, along with a host of eggcellent SilverWood authors. 😉
My contribution to the blog hop is a light-hearted very short story that takes as its theme every woman’s love of chocolate. I’ve always loved chocolate, though my relationship with it hasn’t always been easy, especially since my daughter was diagnosed with Type 1 Diabetes at the age of 3.
But it is a complete myth that diabetics can’t eat chocolate – they can, they just need to give themselves enough insulin to offset it before they eat it. So if you know a diabetic and are wondering what to give them this Easter, don’t hesitate to give them a chocolate Easter egg – and not “diabetic chocolate” either, an evil concoction made with a sugar substitute that spoils the flavour and has no health benefit compared to normal chocolate. (Yes, there IS a health benefit – to dark chocolate, in moderation, and it’s a useful source of slow-release carbs, which is why Paula Radcliffe eats a couple of squares before running.)
This and other myths surrounding life with Type 1 diabetes will be dispelled in my new book, Coming To Terms With Type 1 Diabetes,which SilverWood will be publishing in paperback form for World Diabetes Day, 14 November 2014. The ebook edition, for which SilverWood provided this beautiful and appropriate cover (the blue circle being the international symbol of diabetes), was published for World Diabetes Day 2013 to raise awareness of the condition and funds for research into a cure. and has gathered many 5* reviews and has been called by a leading GP “one of the best things I’ve ever read about diabetes”. The paperback will have new bonus material added. To keep informed about the book’s progress, and for an invitation to the launch in Foyles’ Bristol Bookshop on Thursday 13th November, please click here to sign up for my mailing list.
In the meantime, I hope you enjoy my chocolate-inspired short story below – and if you like it, please leave a comment. As an incentive, one commenter drawn at random on the day my book is launched will receive a free signed copy of the new paperback – plus a slim bar of chocolate to use as a bookmark!
The Alchemy of Chocolate
If you dip a wafer biscuit into a chocolate fountain enough times, eventually it won’t fit in your mouth. Much the same had happened with Jennifer’s body. It was as if every bar of chocolate that she’d ever eaten had been melted down and painted onto her frame.
Oozing into hidden places, the fat encroached so slowly at first that Jennifer was slow to notice her transformation. Then, one summer’s day while sunbathing on her lawn, she realised that she’d no longer pass the fat test she and her friends had used at school: the ability to lay a ruler flat across her hipbones. (That was the best use they’d found for their geometry sets).
By the time she came to squeeze into an old pair of cords for Bonfire Night, Jennifer observed that where her stomach had once been concave, it now billowed out, like a ship in full sail. No wonder sleeping on her tummy had become uncomfortable.
Trying on a party dress for New Year, she spotted that her waistline only curved inwards when elasticated clothing constrainied her flesh.
By the Spring solstice, the fat had found new places to hide. Her eyelids were thicker, and when inserting an earring, she had to push harder before the post emerged on the other side of the lobe.
Jennifer was glad when spring sunshine came early, because it gave her licence to go bare-legged. Lately, tights had become irksome. Unless she aligned their waistband precisely with that of her knickers, skirt and petticoat, her silhouette resembled the scalloped edge of a doily on a plate of cakes.
At Easter, Jennifer was quick to remove the temptation of her Easter eggs – by eating them. But then, at last, she decided to take action about her surplus fat. Precisely what action, she was not sure. She was unwilling to relinquish chocolate, or indeed any kind of food. Nor did she fancy exercising her way into shape. Poring over a list of how to burn calories, she was horrified by the ridiculous distance she’d have to run to work off a single bar of Dairy Milk. There had to be an easier way. It was just a question of dispersing fat rather than storing it.
Then, lulled to sleep on Midsummer’s Eve by an exceptionally delicious hot chocolate, Jennifer had a remarkable dream. She dreamed of the perfect recipe for weight loss.
Next morning on waking, she knew exactly what to do. She rushed downstairs to her kitchen and assembled in a mixing bowl the ingredients dictated by her dream. Instead of stopping to wonder how this magical formula could require only store-cupboard staples, she got on with beating the mixture, her wooden spoon a biscuit-coloured blur.
Once the batter was blended, she tipped it into a saucepan and set it over a low heat, chanting the mantra that had also come to her in the dream. When the mixture was smooth and warm as the perfect waistline, she decanted it into a jug and popped it in the fridge. She knew instinctively that this was the correct next step.
When she arrived at her office for work, she was so impatient for nightfall – the witching hour, or so her dream had told her – that she could hardly concentrate on her job.
As soon as she arrived home, she slipped on her nightie, took the jug from the fridge and with a medicine spoon measured out the dose prescribed in her dream. She swallowed the quivering spoonful in a rush, before she could change her mind and retired to bed to await the results. The anxious fluttering in her tummy didn’t stop her from tumbling into solid, dreamless sleep.
Waking next morning, she climbed out of bed, slipped off her nightdress and flung it distractedly on the bed. Reaching with her right hand behind the back of her neck, she grasped what the previous night’s dream had told her she would find just above the nubbly bone at the top of her spine: a trapezoidal zip-pull. She grasped the metal.
Bending her head forward to clear her long dark hair out of the way, Jennifer tugged the zip-pull between thumb and forefinger as far as she could. Then she stretched her left hand up behind her back to meet the right one, and continued pulling the zip down, slowly, slowly, till it reached the base of her backbone.
As the zip-pull stopped abruptly at her coccyx, the thick flesh covering Jennifer’s upper back and shoulders started to feel loose. Soon she was easing off the entire outer casing of flesh as instinctively as a snake sheds its skin. Wriggling her hips and thighs to dislodge this pudgy onesie, she sat down on the bed, peeled it off her calves and finally stepped out of it on to the bedside rug.
Only now did she have the courage to glance in the dressing table mirror. There, to her delight, in a flawless casing of fresh skin, was her slender teenage outline. It was like meeting a long-lost, much-missed friend.
Glancing down at the discarded, Jennifer-shaped fat that lay perfectly still on floor, she wondered what on earth to do with it.
But of course! It was recycling day. She could simply put it in the green wheelie bin. After all, it should compost down as readily as bacon rind. Better to throw it in the wheelie bin than put it out in the garden for the birds.
With a new lightness of tread, Jennifer took a few steps around the bedroom. She felt decidedly different. The top of her thighs no longer rubbed together, her arms lay straighter against her sides, and she no longer felt that her stomach had been lagged, like the insulating jacket wrapped round a hot water tank.
Beginning to enjoy the full effect, Jennifer turned this way and that. But it wasn’t the slim reflection in the dressing-table mirror that caused her to smile. It wasn’t the realisation that her low-cost recipe would fetch a fortune on the heaving market for diet products. Nor was it the recognition that she’d achieving every slimmer’s dream of alchemy, turning fat into gold. It was the thought that she could now eat as much chocolate as she liked, without ever having to worry about gaining weight. It was a dream come true.
This story features in “Quick Change”, my first collection of flash fiction, which you can buy from Amazon here: Quick Change.
My post is just one of many interesting articles in the SilverWood Spring Blog Hop. To hop forward to read these, please click on the links below. You’ll also find more colourful Easter eggs to collect and some more giveaway prizes!
A post about making new friends and keeping old friends all over the world via the internet
As the former pupil of an international school, one of the reasons I love the internet is that it has enabled us to reconnect, decades later, wherever we now live.
I spent four of my teenage years at Frankfurt International School (FIS), which in those days was attended by children of around 60 nationalities. Not only did I make friends from countries I’d never visited, I even discovered some new countries that I’d never heard of, and some, in those Iron-Curtained days,which didn’t even officially exist. Yes, Estonia, I’m talking about you. Kudos to Paul who in the school yearbook stated his nationality as Estonian, even though I suspect his passport was either American or Russian.You can take the boy out of Estonia, but…
I asserted my own national status equally proudly, retaining my British accent when my few fellow countrymen in the school acquired the American twang dominated the classrooms. All lessons were officially taught in English, apart from French and German.
Opening International Doors
Despite spending most of my first 14 years in a sheltered London suburbia (Sidcup, to be precise), passing the next four years in an international community made it second nature, once the internet had been invented, for me to make new international friendships online, as well as renewing old connections from my schooldays.
I get a particular thrill when friends from different parts of my past hook up with each other online, such as a Becky, former neighbour befriending Janet, a past Californian classmate, and Katherine, a Sidcup schoolmate meeting – yes, meeting in real life – Jacky, a newer friend from recent years. They’d got into conversation while replying to my Facebook posts and something just clicked between them, if you’ll excuse the IT pun.
I now look out for and encourage such connections, loving the feeling that the internet is turning the world into a village. As an optimist, I prefer that rosy view to the more cynical notion that the internet’s turning global citizens into international spies. (Don’t get me started about Google Earth…)
I’d had no idea that Christine had any interest in diabetes, but she’d noticed my ebook, Coming To Terms With Type 1 Diabetes. Long story short: the result was the publication earlier this week of my article on Glu’s website. Being a British writer, I was very pleased to have this opportunity to reach a largely US audience, and also to find out about this interesting diabetes-related website that otherwise might have passed me by. Thank you, Christine, for this opportunity – another fine example of serendipitous connections on the internet!
For any author, getting your books into foreign parts is always a thrill, and I couldn’t close this article without thanking Norio, a former classmate and good friend from my FIS days, for taking my first book on his travels, like some kind of global ambassador. Thank you, Norio – old friends are pure gold!
Who have you connected with from your past on the internet?
What’s the most obscure place the internet has helped you reach?
Last Thursday I officially launched my new e-book in style. I took to the airwaves of our local BBC radio station for an interview on its popular morning show to tell the world (or at least the county of Gloucestershire) all about Coming To Terms With Type 1 Diabetes: One Family’s Story of Life After Diagnosis.
Still buzzing with the adrenalin triggered by a busy few weeks preparing the e-book, I drove to the station’s Gloucestershire study in glorious late autumn sunshine.
Welcomed with a cup of tea by a helpful, smiling receptionist (what a great job to have, listening to the radio and meeting people all day!), I was soon shown in to the studio where Chris Baxter’s three-hour long programme was already in full swing. (I’d been listening to it in the car on my journey to tune myself in.)
I’d never been interviewed inside a studio before – previously it’s been down the line or as part of an outside broadcast, most recently at the Cheltenham Literature Festival last month. (More about that here.)
In The Hot Seat
After the bright sunshine outside on the noisy London Road, the thickly padded studio was dark and peaceful, womb-like and comforting. A big smile across the desk from presenter Chris Baxter put me immediately at my ease, and we were soon chatting at length about my book.
Chris Baxter is a kind, sympathetic and caring type whose programme is a real community service, reporting on achievements and concerns of local folk and bringing them together for common causes. I was delighted when a listener phoned to join to our discussion.
“I was diagnosed with Type 1 diabetes 68 years ago, and I still do all my own gardening,” she said proudly. “I’m coeliac too, but that’s just another diet to get on with.”
Just what the anxious patient wants to hear, or the anxious parent of a newly-diagnosed child, or indeed the medical professionals whose lives revolve around keeping the chronically ill healthy.
That’s exactly who my e-book is aimed at, so you can imagine my delight when one of the earliest reviewers turned out to be Dr Carol Cooper, the medical journalist, broadcaster, and lecturer to doctors in communication and consultation skills. She summarised the book as follows:
“It’s a lovely uplifting little book, full of insight, wit, and practical know-how. I think it will appeal to anyone with Type 1 Diabetes and their family. Health professionals would also find it useful. The book is beautifully written. A little treasure as well as a ray of hope.”
Over And Out
After the interview was over, the receptionist kindly took a souvenir photo of me looking a bit pleased with myself. Then I stepped out, blinking, into the bright sunshine, only to realise halfway back to my car that I’d left my black beret on the floor of the studio. I retrace my steps to retrieve it. (I think I was stretching the limits of the receptionist’s job description that day.)
Later, the show’s producer kindly emailed me some .mp3 files of the interview, spread across two files because I’d talked too much to fit into one easily emailable package. I have BBC Radio Gloucestershire’s kind permission to share them here with you, for the benefit of my friends who can’t catch the show on BBC iPlayer because they live outside of the UK. I hope you enjoy the interview. I certainly did!
Click here to hear the first part:
Click here to hear the second part:
To my delight and surprise, by the time I got home, my e-book was already in the Amazon bestseller charts in its category, #4 in the “Health and Fitness > Disorders and Diseases” chart! Admittedly, I’ve never had a burning ambition to top that particular chart before, but if it helps raise funds to find a cure for Type 1 Diabetes, that’s fine by me!
To order your copy of my e-book in the UK from Amazon, click this link . In any other country, just enter my name and “Coming To Terms With Type 1 Diabetes”, and it should magically appear. UK price is £1.99, US $2.99, and all profits go to the Type 1 diabetes research charity, JDRF. Thank you for your support.