Eminem and me – 8 mile(s)

20131215_183655Yes, this is what a man in running tights feels like after running 8 miles in the pouring rain!  He feels…bright yellow?

8 mile

But, running the London Marathon 2014 for visually impaired and blind children is more than enough to get over the humps and bumps of soggy training sessions.

I saw a great website today, a parent’s story of Cortical Visual Impairment (CVI), which is what Olive has.  Though to say she ‘has’ it is not strictly correct as its more of a description of a range of things that affect the visual pathways in the brain – it’s not a condition as such.  Maybe it’s more a term.  Terms and Conditions? You can’t get away from them!

The sentiment of the website is very positive.  It talks a lot about nueroplasticity and the potential for the brain to re-wire itself – especially in its early years.

There are lots of references to Dr. Christine Roman-Lantzy, a specialist in the area of CVI and advocate of the potential for change and development after an ‘insult’ to the visual pathways has occurred – which is normally something that happens at birth with kids that have CVI.

CVI isn’t curable, as such.  Although there are lots of advances in therapy areas to encourage children to develop their functional vision.   Things can and do often get better, by all accounts.

Getting ‘on it’ early is certainly a gauntlet worth running.  But, even in our short time as parents of a VI child, it’s definitely a marathon…not a sprint.


Dawg Tired – Run like the Whippet

20131213_073341-1This is Carla the Whippet at 7.00am after I had returned (yes, got back from) my Friday fartleks.   Running in the park, in the dark at dawn whilst she…kips.  In my bed!  With my missus!

Seems that dogs were a real theme of the run this morning.  Something about a 14st man running up and down a track, panting, really get their blood up.  Various yappy mutts bobbed up to me this morning, chased, or chastened by their owners, flashlights waving in the shadows.  It was like a scene out of Fargo.  Friday Fargo Fartleks.

And all this before our race hound has even lifted her head from the pillow!

There is a great new post on the RLSB website from a mum with VI children.  They’ve been on the tele and everything! With Alan Titchmarsh no less!

And remember that you sponsor me for the London Marathon and the RLSB at my donation page here.

The Prince of Fartlek

Batman West Ward RunI run like Batman – the 60s one, not Christian Bale.  This morning, under the cover of darkness, I ran in a mode known as fartlek.  Yes, fartlek.  A Swedish word meaning ‘speed play’.

You sprint as fast as you can for as far as you can.  Then, mild nausea and hyperventilation permitting, you jog for a bit. Repeat until cooked.

How to describe it? Your arms and face do funny things.  You kind of flap and gurn whilst thudding along in high-viz clothing and compression socks.   I am not psychologically ready to do this in the clear light of day.  I am not really ready to do it at all.  But, it’s all part of getting desk-bound sugar fiends with all other vices respectably plotted on the life timeline into…shape.

Once you have fartleked five of six times, you give up.  You get that I-want-my-mum feeling.  After a rest, disguised as a stretch, you stumble back home.


When your body has come to terms with what’s just happened and the endorphins kick in, well…it’s another story.  Christian Bale is within reach.  The saggy tight-ed, biff-pow merchant that was Adam West (who always looked a bit too slack for the job) now feels like he has a shot at the title.

CGI can make it work.

BMI will be your friend.

MFI…made affordable furniture?

And all these things are true in the benign, yet ever so slightly puffed up London Marathon 2014 world that says:  I’ve Just Fartleked!!!!!


Future Exchange – Working Towards Work

GetImage.aspxI met a guy on Saturday who had lost his sight completely 6 months ago as a result of a rare genetic condition.  He was sitting next to a chap who was born blind.  He, in turn, sat next to a girl who was blind and also in a wheelchair.  She sat next to a 19 year old girl who had lost most of her sight over a period of years from the age of 13.   What a mix!?

They were all attending a leadership workshop at Future Exchange – the first event of its kind hosted by the RLSB.  I was there to provide a parent’s-eye-view on visual impairment.  I thought I was there for their benefit. Turns out that they gave me a bunch of advice on bringing up a kid?!  They also shared lots of personal experiences about what it’s like growing up with a visual impairment.

On the theme of leadership and the next generation of young visually impaired people, almost all of the sentiment in the workshops was very positive. The the RLSB youth forum reps, Joy and Asher, were very well organised and  their natural and considered delivery put everyone at ease.  They were real pros!  (and I should know – I’ve been in more workshops than Pinocchio).

For me, the really big message from the whole day was the issue of Jobs.   The event was full of bright young people, really keen to get on, passionate about breaking away from the stereotypes that surround them and encouraged by being given a ‘voice’ at the event.

Whilst very positive, by the end of the day you could hear the frustration, both stated and implicit, expressed about their collective situation.  One girl summed it up in a sentence:

“I’m totally normal.  I’m a normal person.  I just can’t see.”

Of course, she’s not normal.  She’s exceptional.  Ironically, she’s exceptional in ways that most employers would love to bottle-up and serve on a daily basis to their workforce.

Maybe I was a bit giddy on the whole thing.  It was a novelty to be surround by such a cool bunch of people.  But, part of me thought that all the answers to the future were right there in the room at the Future Exchange.  Easy!

However, it’s important not to get carried away.  The reality for VI people is that the majority won’t find employment on more than a temporary or volunteer basis today.  Only 38% of blind and visually impaired people of working age in the UK are employed.

It’s interesting then that a lot of the emphasis in the panel Q&A at the end of the event was on starting up businesses and entrepreneurial spirit.  Tim Campbell, a high profile Apprentice winner and dedicated entrepreneur with a third sector passion, gave some great advice for ‘getting at it’ if you want to start up your own business. Ben Quilter, a VI paralympian and Judo gold medalist made a real connection between the challenges of VI and reaching the top of his sport.   The panel served as a vitamin shot for anyone needing that extra shove into action.

I’m sure there were also things to untangle for people in the audience once the buzz had died down – those not motivated to run a business, or compete in a sporting arena, those who just want the ‘normal’ stuff.  Cash.  Independence.  All that.  Great that a charity called Blind in Business was at hand to provide advice on the practical aspects of getting a job.

All in all, the event tabled lots of ideas, concerns and experiences.  With any luck, the manifesto it goes towards creating will pave the way for the exceptional and the exceptionally normal to ‘get on in life’.

The most striking thing for me at the event was the diversity of people in attendance.  Not so much the social diversity (class, ethnicity etc.) but the diversity of conditions that sit under the banner of being VI or Blind.  No two people in the room saw the world in the same way.  Each had a different story.  Combined, they shared an aspiration for the future.

Wow!  That’s just like…everyone else, then?  (-: