Running for GBS

Running for GBS

The fight began with the common cold. The immune system kicked into action, the cold was defeated. But for some reason the message didn’t get through to the immune system to stop fighting. It turned on itself. The nervous system is like electrical cables running through the body. On the Sunday night my mother had a tingling in her hand. The following morning she’d lost use of her arms. That night she was on life support. Her immune system had eaten into the electrical cables; her nervous system destroyed by her own body. From that moment she was locked in. Totally paralysed. Unable to move. Unable to communicate. (We improvised with a letter board and her blinking her eyes). She had been struck by Guillain-Barré syndrome (GBS). Months passed and slowly her nervous system rebuilt itself. Today, several years later she is almost back to her old self. We wrote of the experience on her blog about Guillan Barre Syndrome (GBS). GBS is thankfully rare condition, but can strike anybody. Think about that the next time you come down with flu.

So why am I telling that story? In three weeks I’m running the London Marathon. When I say that to people, the reply is inevitably “which charity are you doing it for?” I didn’t expect this. I wasn’t doing it for charity. But I am now. And the charity I’m doing it for is GAIN, the charity who supports people with GBS and funds research into this dreadful condition.



I’m not a runner. I hate running. But I’m curious. I remember the first London Marathon on TV when I was a child thinking “when I’m old enough, I’ll do that”. Every year when the marathon comes and goes I remember that thought, do nothing about it and promptly forget about it. Social media changed things last year. I saw a tweet that the ballot for entries for the marathon had just opened. Curious. I entered. No-one ever gets through the ballot, and if you don’t get through your fee goes to charity, so I didn’t really think twice about it. Several months later, what wasn’t supposed to happen did happen. I got a place. Better start training.

Before receiving the acceptance letter I had barely run 5KM that year. Dragging myself out of the house was a chore. A painful chore. I hate running. Technology eased the pain. A Garmin became my new toy and Strava became a close friend. On a recommendation I got a trainer (my 7 year old daughter was amazed that I have a trainer that skypes. But Daddy, trainers are on you feet!); Kris tells me what to do and I dutifully obey. Soon I didn’t hate running so much. Running in cold, windy wet January evenings even started to become something to look forward to. Not only was I getting fitter, weight began to fall off me. (That might also be down to my giving up alcohol and, following reading This book experimenting with going vegetarian, and as much as possible following a plant-based diet). I recalled my time in Northern India in Ashrams and Buddhist retreats. Mindfulness. I used mindfulness to stay on track.

Just finishing the marathon, getting around the course became a pretty lame goal. I’ve started thinking in terms of pace, personal bests… I ran the Surrey half marathon in just over two hours (I’d have done it under two but I needed a wee half way round… That taught me a vital lesson on hydration!) On Sunday I ran 21 miles. In three weeks it’ll be 26. So please sponsor me. When you learn that a relative has this unknown condition called GBS, GAIN provide fantastic support. And with their help hopefully we’ll better understand GBS and one day it’ll be a thing of the past.  Not much time now.  Please sponsor this awesome cause.

Do you want to be famous?

I’m in Hong Kong and my wife and Children are out here with me. When we walk on the streets with my daughter sitting on my shoulders many people stare and point. Over the weekend we went to a beach and people were pointing their camera and taking photos of her. None more so than the mainland Chinese in their coach parties. It’s not every day they see a blond three year old with a riot of curly blond hair. And it bothers me. Who are they to take pictures of my children. Some peope ask and I generally refuse. I begin to get a feel for what I might me like to be a celebrity. There is however, a lack of consistency in my approach. Why will I not let the Chinese tourists take photos, yet I post my own on Flickr for all the world to see? My rationale for Flickr is to let family members to see our pictures, but they are in the public domain.

We live in (the UK) a world where 1 in 7 teenagers wants to “be famous” when they grow up. Not “be rich” as is used to be – there was an implication of effort and graft in that statement, no-one got rich by doing nothing at all. But now it is possible to get rich by being talentless and doing nothing but being on a reality TV show. A sad state of affairs I feel. And anyway, who would want to be famous, to have random people pointing at you and sticking their camera phones in your face? I certainly didn’t like my brief experience of that.
But then I must wonder. With social networking is there an element of all of us wanting to become famous? I’m broadcasting to the world who I am via flickr, through my blog (and I watch how many subscribers I have and strive for a higher ranking within technorati). I look at google analytics to see who is visiting my site (Hello Hanoi, Singapore, Kuopio and Buffalo). I increase my professional network on Linkedin. Maybe I put my videos of myself on Youtube or MySpace. It is all about creating a personal cult of fame. Maybe I don’t like the TV version of it, but I think that on the web I’m hooked. I do want to be famous. Grrrrrrr.

Identity crisis

What am I? Professionally that is. The question arose when we recently registered the birth of our daughter Olivia (when asked what the baby is to be called Lindsey got in first. I didn’t get a chance to say what I was going to name her; Orphelia Cordelia…).

On the birth certificate is “father’s occupation”. Gasp! What is it? Imagine in generations to come and my great, great, great, great granddaughter is doing a family tree and she is looking up the records and she finds me on the birth certificate and looks at my occupation and an instant impression will be made.

Strictly speaking I work for ThoughtWorks as a Business analyst. But I don’t often see myself as such (the BA role is all too often viewed as just a person who captures requirements with little scope for creative or strategic thinking. I’m happy to say in TW we do a lot more than just business analysis…) Anyway, not wanting to be eternally pigeon-holed as a BA – I want great, great, great, great granddaughter to think good things about what I did, not “uh, he wrote specification documents” I looked for a new title.

On our marraige certificate my occupation was a “management consultant”, but I don’t fancy being one of those any more.

I could call myself a “Company Director” – a legacy of my contracting days; I’ve not closed the company down yet. But that isn’t really my occupation; primarily I’m a ThoughtWorker. Hmmmm. That’s a bit pretentious – Occupation: ThoughtWorker.

OK, so what do I do. Well there’s interaction design.

Occupation: “Interaction Designer”. Nah, would progeny know what this means? (In her time interactions will be hard-wired to the senses so such a role will be redundant).

“Customer experience architect”. She’d probably laugh.

“Usability dude?” she’d probably consider me to have been an anal type who complained a lot and found fault in other peoples work.

“IT Consultant” nah, I spend just as much time with “business types” as IT types. I’m even doing marketing qualifications don’t you know.

“Solution architect” What sort of solution?

“Facilitator?” Facilitating what? Nope, not important enough.

“Innovation… ummmm, something?”

So I’m clutching at straws and the birth certificate needs completing and so I shrug my shoulders.

Occupation? I sigh. “Business Analyst”.

“So great, great, great, great grandfather was a business analyst. Hmmm, I suppose he analysed businesses…”


The steady sonambulism

A new baby means a lack of sleep. In the first few weeks they figure that the baby will be fed 6-8 times in a 24 hour period, so you can assume that you will be up every four hours. But what they don’t tell you / what you forget is that you start the feed every four hours. The feed takes say half an hour, add ten minutes trying to get the wind up and you could be looking at another half an hour to an hour settling the baby back to sleep. So she starts screaming at 3am, 4.15am you crawl back into bed giving you 2 and 3/4 hours sleep before it starts again. Whaaaaaaaaaaaaa. Hence if my eyes are red and I sleep walk through the afternoon I trust you will understand. Yawn. zzzZZZZZZZZZZ

It’s a girl!

And so at 11.50am on Thursday 25th May Lindsey gave birth to our brand new daughter. A bit of a surprise, we all thought it would be a boy – but that was a relief to Lindsey, we wouldn’t have to discuss the finer points of my preferred choice of boy’s name – Ozymandias. Instead we have a healthy girl, weighing in at the imperial 7lbs and 7oz. And her name? Sadly it is not to be Orphelia (my choice again) but Olivia Ita McNeill. India is delighted with her new younger sister, and Lindsey and I wonder if we will ever know sleep again. Oh, photos (can’t upload them on wordpress so on flickr):-