Live your potential

The Power of One

The power of the individual fascinates me. Before I worked at the Millennium Commission, I had always worked with organisations. I believed that they were the ones with power, with the capacity to effect change and make a difference. At the Millennium Commission this belief was exposed in all its falsehood. The Commission was a lottery distributor, probably best known for its role in backing the Millennium Dome, perhaps also for its funding of Tate Modern and the Eden Project. For a quick summary of what it achieved, visit here. The Commission gave away £2.3 billion, to village halls and church bells, mountain railways and new town squares, festivals and millennium beacons. But hardly anyone knew about the £100 million it gave to individuals to undertake projects that would benefit themselves and their communities. There were some 32,000 of these Millennium Award winners, youngest 7, oldest 97, scattered all over the United Kingdom. My job was to try and create a network that would keep them together once their projects had finished. It involved me making a lot of speeches (the best network, I reckon, is geographical and one that gives people the chance to meet up face to face). This gave me the opportunity to meet hundreds, if not thousands, of the Award winners and hear their stories. What extraordinary stories. The things that people had overcome. The things that they achieved. They took my breath away. And from the virtue of a small amount funding (on average £2,500 for a one year project), many went off to raise many thousands more. I remember one Award winner who came up to me and said "Because of the money you gave me, the way it made me feel, the recognition you showed me, I went out and raised another £350,000". But regardless of the money they raised, every single one of them had done something extraordinary. It completely changed the way I saw individuals, what they could achieve, the impact they could have. For a fascinating set of insights on the Millennium Awards Scheme, read the Social Impact Study by Annabel Jackson. Most of the Award winners thought they had made little difference, affected very few people. Yet on average, they reached 2,500 people - on average. One of the quotes I used to give was one from Martin Luther King: "Before you've finished breakfast this morning, you've depended on half the world." I'm intrigued by the idea of how connected we are, and yet how unaware we are of this. Of how our actions have huge impact, often on people we will never meet. Again, Martin Luther King expresses it far more articulately; "We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly." I tried to get the Award winners to think about this by pointing out to them that I told their stories to many others, who would in turn repeat these to more.

I've been thinking about this again because I read a letter in the Spinal Injuries Association's magazine. If you're driving and run low on petrol, you can have a problem if you're in a wheelchair. You can't get out of the car to fill up. More importantly, if you have no cash, how do you pay? Many places won't accept cheques now. You can't give the attendant your card and PIN number (I asked the bank. They said if I did, and then money was stolen, I'd be completely liable). The SIA letter mentioned signature cards, which I'd never heard of. Great, in that you don't have to have a PIN number. Not so great in that all your cards then become signature only, so you can't use PIN in shops any more. And when a counter is too high to sign on... So it's an all or nothing: have signature card and lose all your PINs, or be unable to pay for petrol sometimes (and remember to always carry cash with you). I'm not on for all or nothing. So I've been speaking to managers at First Direct to see if there's some kind of compromise available, perhaps having a separate emergency account with a signature card. I'm sure I'm not the only one in this situation. I know I'm not. So, the lengthy point I'm trying (somewhat laboriously) to make is that I'm sure the guy who wrote the letter to SIA has no idea that his words may modify the banking system in some small way.

The power of the individual... Later that day, I saw how powerless the individual can be - the other side of the coin. I spoke to a friend who's in a bad way, talking about suicide, ending it all. I don't think they're at the stage when they will actually do something. But if they do, there's absolutely nothing I can do to stop them. He's got to realise that his life is worth keeping. I can tell him how much I value him, his presence, but ultimately, it's up to him. I am powerless. A humbling thought.

Community

I've had an infection for the last few days. Felt weak, extremely tired, stiff as a board, in a lot of pain. Annika's in London and the f*****g au pair seems to have quit (more on that another time). So I'm home alone with the kids who have started back at school. Which means I have to get back into full childcare mode, whilst managing this infection. If we still lived in London, this would be a real problem. But because we live in a small community where we know many people (partly through having run the toyshop), because the children go to a small school, because we've learnt to call for support, things are very different here. I make the breakfasts and packed lunch. But someone else in the road takes them to school. Another friend picks them up and brings them home. A third comes round in the evening after the children have gone to bed to help clean. Our elderly neighbour - he's 84 - helps out in the garden. Yes,  I can do these things. But they take a long time (ever tried pushing a hoover around in a chair with wheels on? Sit in a shopping trolley and give it a go. You spend quite a bit of time going backwards). People are extraordinarily kind. And what's particularly lovely it's that these acts of kindness can be reciprocated. I know none of our friends want or even expect anything in return. Yet we do similar things for them - pick up children, go shopping, take hot meals round, run errands. Mutual support, you could call it. Or living in a real community. Is the community dead? Not here, not now.

Arboretums and Westonbirt

It's spring at the Westonbirt Arboretum and the camellias and magnolias are in full flower. They say: "Spring is a very special time at Westonbirt – when the opening of blossom and new leaves softens the sharp outlines of bare winter trees. Throughout the arboretum colour abounds – with spectacular magnolias, camellias and rhododendrons taking central stage in the Old Arboretum, while less showy but equally enchanting swaths of wild flowers such as bluebells are the chief delight in Silk Wood."

Their historical summary doesn't do the place justice: "Westonbirt was started around 1829 and many of the specimens now present date back to that time. The site covers an area of 600 acres and includes areas of Ancient Semi Natural Woodland, specimen plants and open grassland." This is way too modest. I'd use adjectives like "stunning", "breathtaking". I've never been before but I'll be going again many times. There's something very healing about trees, and Westonbirt has a lot of them. It's also completely accessible in a very gentle way. Some places shout out "look, we're accessible. Here are our ramps and flat walkways and accessible toilets". I don't like those so much. Westonbirt is far more subtle, in that it's amazingly easy to get around, but there are no special areas or elements for wheelchair users like me. Everyone shares the same paths, the same walkways.

Yes, I did borrow a power chair (apparently, this is what you have to call chairs that run on batteries. Electric chair has, they say, mmmm, unpleasant connotations). It's taken me a while to accept this as an idea. I feel very disabled when I'm in a powered chair - they're big and bulky. But, necessity is the mother of, as they say, and 600 acres is a long way to push. Maybe this is why my stamina is not increasing, but I think the kids would get a bit fed up waiting for me to struggle along in my manual beastie.

Fabulous food too. Somewhat taken aback to be offered salmon with samphire, prawns in a lime sauce and for it to actually taste of all those things. Mmmm. Lots for the kids. Even decaf coffee and soya milk - always a good test...

So, 10 out of 10 for Westonbirt Arboretum!

Pain

I reckon the pain is the worst. I feel it all the time, sometimes more, sometimes less, but always there. Its location varies. Sometimes it's in my back (phantom pain? How can I feel pain in my lower back when I have absolutely no sensation there?). Usually it's in my right arm. When I fell from the tree, I must have landed on that arm, or hit it badly somehow. I have a brachioplexus injury (for ages I could only think of it as a bracchiosaurus injury), which, as I understand it, means nerve damage. According to the doctors, it can't be healed. In reality, it did mean severely impaired movement and reduced strength for months, though luckily most of that has come back. No, it's the pain that's the worst. Sometimes it's like a deep itch that can't be satiated. Sometimes it feels like my arm is on fire. Sometimes it just throbs. It stops me from sleeping and reduces me to taking strong painkillers at night. I hate to, and I'm alarmed by how addictive they can be, but without them, no sleep. And that can become a vicious circle - pain means I don't sleep, fatigue means more pain, which means less sleep and on and on... Yes, it sucks.

Coping or not

Why is it that some people cope with a spinal cord injury and some don't? Obviously there are huge degrees of difference in coping, but some people seem to get on with their lives, others just give up. Take two tetraplegics I know, for example. Both have a similar level of injury with similar outcomes: along with all the problems I have, neither is able to grip with their hands. Both are a similar age. Both need carers. And yet, one has gone back to work. The other stays at home, in bed, all day, and believes his life is over.

When I was in hospital, once I'd finally grown to accept the reality of what had happened and had realised there were still many things worth living for (more on this another day), I started to get out, to leave the Spinal Unit and go into Salisbury and further afield. I couldn't understand why people would want to stay in the Unit, or, once they'd left, why they would stay at home all day. But once I myself got home, I understood. It's hard work. It's hard work getting into town (a half-hour push, instead of a ten minute walk). It's hard work getting around town. It's frustrating not being able to get into shops easily, if at all. With the internet, it's easy to get what you need online. There are days when I just want to stay in the comfort of my own home and not have to face the hassle of the outside world. It's surprisingly easy to fall into a state of not wanting to go out at all.

It's all in the mind. How you cope or not is entirely to do with the kind of person you are, the kind of person you were before the accident. If you're someone who makes things happen, rather than waiting for things to happen to you, then you'll cope better. If you're someone who rises to a challenge instead of being defeated by it, then you'll cope better. If you're a (even mildly) sporty person, and know that training and persistence can overcome many obstacles, then you'll cope better.

Often people say to me "oh, you're such a great role model. You should go and be a life coach to people who've suffered life-changing injuries. Show them how life still goes on". I'm happy to talk to anyone about my experiences. But ultimately, it's an internal battle. Until you yourself accept what's happened, and move beyond the "my life is over" phase, then I don't think anyone else can really help you. Of course, they can be there as examples, as possibilities. But it's an intensely personal journey. Soon after my accident, I remember meeting someone from Backup, an organisation that supports people with spinal cord injury, in particular through sport. He was fit, handsome, thin, positive. And talking to him made me feel terrible, that this was a state I could never achieve (and didn't especially want to), that my life really was over.

So I don't know how I can help people cope. Maybe by being a role-model. Certainly by being honest about how desperate I was. By listening. By writing this blog. Different ways, more to explore.