Live your potential

Reflections and resolutions

2008 has been a strange year. I have only now spent more time out of hospital than in: 16 months since I left, 14 months inside. It's been a year of some drifting, getting used to life outside, being the main carer at home again but now in a wheelchair. It's been a year of music, having been given an iPod last Christmas. It's been a year of re-establishing old friendships and building new ones. It's been the year when my beloved cat finally accepted me again, having spent the last twelve months running away whenever I wheeled near.

2009 will be the year I return to books. I will get fitter and less fat. I will push myself to the swimming pool rather than drive there. I will push myself into town for my coffee fix. I will not accept bland acknowledgements of complaints: I will follow any complaint through to resolution, even if it means invoking the Disability Discrimination Act. I will visit more schools to observe their teaching styles. I will start my PGCE in September.

It's going to be full of excitements.

Don John at Stratford

Today we saw Don John at Stratford, a Kneehigh Theatre production in association with the Royal Shakespeare Company. A breath-taking show about love, lust and loss. I was so moved that I felt I had to get up and dance. Wonderfully, after their curtain call, the actors reached into the audience and brought people on to the stage to waltz. Extraordinarily magical. Go and see it if you can. It's on tour now until the end of March.

An interesting venue, the Courtyard Theatre. The RSC is being redeveloped for an eye-watering £100 million plus. I get resentful at their long list of donors. There are so many fabulous arts projects out there that cost so much less and demanded only a tiny portion of lottery cash. One of my favourites, where I had my leaving party when I moved on from running the lottery side of things at London Arts, was the Poetry Cafe. Under £100,000 to create a cafe, library and accessible spaces entwined with poetry throughout the building, on the light shades, on the stairwells. In my eyes, that's a model lottery project, not one that sucks up cash at the expense of so many others.

Still, the Courtyard is accessible (as it should be for a new, lottery funded venue!) Easy to get around, great seats for wheelchair users, fine cafe with tables you can get under. And it gave me a chance to see one of the best plays I've seen for a long time.

Hairspray and other delights

Yesterday Arden and I went to see Hairspray, a musical based on a film that has itself become the inspiration for a new film. We had a royal box, velvet chairs, sculptural mouldings, a  spectacular view of the stage and a private door. Cheap tickets too.

The show was at the Shaftesbury Theatre, a listed building and not a model of accessibility. But it was interesting to see what they did to make things better. Staff welcomed us as soon as we got through the door. Long stretchy ramps were put down a side staircase, especially sectioned off for us. It was steep and I needed guidance but we got there. Yes, technically what they did was not within the strict criteria of proper access. However, I saw the show. Many listed buildings say there's nothing they can do to make themselves accessible. They should go along to the Shaftesbury.

Sliding and skating

Today a Boxing Day tradition: go with another family to the skating rink outside Winchester Cathedral. This year, I got on the ice. You have to be accompanied by a responsible adult but that's it. Before we arrived, I searched online to see if there was any guidance - do you have your brakes on? should you use cross country tyres? - but couldn't find anything. I thought it was worth wearing a chest strap. Falling out on the ice could be a comedy moment for spectators, but trying to get back in would be impossible. So I felt a mix of anxiety and excitement.

Yet it was amazing! My friend luckily didn't have to do anything with or for me. I say "luckily" because he turned out to be a terrible skater, more likely to crash into me than assist. So I wheel beside the kids, slipping only if I turn the corners too sharply. Apparently, it's best when the ice has just been scraped flat and has a sheen of water. In those conditions, you can skid and slide. But I don't care. To be able to skate beside the children, help them up when they fall, applaud their tricks - it's my best Christmas present. I even go free.

Credit where credit's due

Nurses never get sufficient credit. They saved my life. Literally. They kept me sane during my long (fourteen) months in hospital. And yet the doctors are the ones that get the respect, the money, the reasonable hours. One nurse in particular really stood out during my time in the Spinal Unit at Salisbury: Storm. Every time I had a shower (on my strange shower trolley until I could wheel myself around), she would know exactly what shower gel to bring, what shampoo. I asked how she remembered. "Well, I treat people the way I'd like to be treated if I was in hospital". Under her care, I felt acknowledged, an individual, rather than just another patient on the Spinal Unit treadmill.

So it was wonderful to be given a chance to thank her. Storm hates public recognition or praise, but when the Salisbury Hospital email newsletter mentioned that they were seeking nominations for a new customer care award, Storm came to mind. A few Facebook emails later to friends who'd been in the Spinal Unit at the same time as me and Storm wins! Flowers, chocolates, a framed certificate and something good to put on her CV. Nothing could really express the difference she made to me and many others. Yet perhaps she has a better idea now.

Parables and living in the present

Craig Ewert told this parable about living in the now: "One day while walking through the wilderness a man stumbled upon a vicious tiger. He ran but soon came to the edge of a high cliff. Desperate to save himself, he climbed down a vine and dangled over the fatal precipice. As he hung there, two mice appeared from a hole in the cliff and began gnawing on the vine. Suddenly, he noticed on the vine a plump wild strawberry. He plucked it and popped it in his mouth. It was incredibly delicious!"

I like this version. Short, to the point, leaves you to work out the meaning.

However, there is a fuller one for those unwilling or unable to look deeper. In this version, there's a tiger at the bottom of the cliff too. And it has a happy ending:

"Now it happened that just as the mouse finished nibbling through the vine and it fell away, the monk found a tiny ledge to cling to. He held onto it for so long that the tiger at the bottom of the cliff got bored and went away, and the tiger at the top of the cliff got bored and went away. Very slowly the monk made his way back on up the cliff, through the jungle, and back into his village in time for supper. While they were eating, the monk told the other monks what had happened to him that day. They all smiled and said they were glad that he was safe. The monk thanked them, and then said: "Yes, I too am glad that I am safe. However, you know how we all try to learn something each day?" They all agreed with him. "Well, I learned something today." said the monk. "What did you learn?" they all asked. "Too often I spend all my time worrying about everything that has happened to me in the past (the tiger at the top of the cliff). And too often I spend too much time worrying about what might happen to me in the future (the tiger at the bottom of the cliff). Or, worst of all, I spend too much time worrying about the nibbling, nagging worries of each and every day (the mouse). And when a true strawberry in my life comes along, I forget to pluck it, eat it, and most of all... enjoy it! So not only should we wish for many strawberries in our lives, but also the wisdom to know they are there - to pluck them, taste them, and fully enjoy each and every precious moment."

No, I definitely prefer the first. It has more impact. The idea that the monk would reach out for the strawberry and absolutely live in the moment... I think that's been one of my ongoing life challenges which, in a way, has got easier post acccident. A pithy saying expresses it well: "The past is history, the future a mystery, but the present is a gift. That's why it's called the present".

Suicide and the right to die

I was deeply moved by the assisted suicide of Craig Ewert. Yes, last week I watched the Sky Real Lives programme, controversial not so much for its subject matter as for its screening of the moment of Craig's death. I was expecting to be very disturbed by that moment, but it was in fact surprisingly peaceful. Craig was wonderfully articulate and very clear about why he was choosing to go to Switzerland and be helped to die by Dignitas. His Motor Neurone Disease meant that he had increasing difficulty in breathing. He knew his suffering would grow. "I'm going to die. Do I choose death now, or suffering with death later?"

It's a good question. I contemplated suicide when I was in hospital immediately after my accident. I was convinced my life was over. I was on oxygen, got my food through a drip and could hardly move my right arm. I spent most of my time during those first few months in bed reflecting on all the things I had done and that I wouldn't be able to do again. It made no difference when I met active and positive wheelchair users. It was only when I shifted perspective to focus on what I could do that I moved beyond thoughts of death. And I had to realise this by myself. It took a long time. I'm saddened to read about Daniel James travelling to Dignitas to die a mere eighteen months after the rugby accident that left him paralysed. Of course, I cannot imagine what he was going through. Of course, everyone has to make their own choices. I just know from my own experience, as someone who used to do loads of sport, that time really is a great healer. That having a spinal cord injury has actually brought many good things to my life. That I can do a huge amount, apart from climb stairs. That I'll be forever grateful that I chose life.

Disabled or not?

Being a wordsmith, or at least being interested in the power of words and their meaning, the language of disability is important to me. For a long time I've been intellectually aware of what's "right", as in "politically correct". But now that I am myself part of a minority, I'm more aware emotionally too. The language people use around me, about me, matters. I hate being called disabled. I simply don't see myself that way. It was eye-opening to be told by a good friend that I am very disabled. True, I have no sensation, function or movement below my armpits. She's right: I am very disabled. Yet I don't feel disabled. I was talking over this in hospital a couple of weeks ago when I went back to discuss my spasm problems. We agreed that disability related more to self-perception and independence. I don't see myself as disabled because I'm very independent. I don't need a carer. I can drive. I can cook, clean (sort of), look after my children.

Yet at the moment I do feel disabled. Arden is really ill with some horrible virus. Yesterday she had an excruciating headache when she came back from school, so bad that it made her cry with pain. Fearful of meningitis, I called the doctor. Luckily, they could fit her in, but I'd have to be in the surgery in ten minutes. With my current spasms and lack of mobility, I couldn't get her there in time. Our neighbour Lilian took her for me. What kind of father am I if I can't take my sick daughter to the doctor? If I can't put her to bed because I'm afraid I won't be able to transfer? A few weeks ago, I asked her if she had one wish, what would it be. I thought given her passion for riding and dogs it would be a horse of her own, or perhaps a puppy. She replied: "I wish you could walk". My heart caught in my throat and tears welled in my eyes. Of all the wishes she could have, she chose that one, for me. I don't so much want to walk for myself as for them. To be the fullest and best father that I can be. Yes, thank god, I'm still here and I'm a pretty good father. I just wish I could do what I used to. For my children.

In Walsall and loving it

 I've known about the New Art Gallery in Walsall for ages. It's lottery funded and when I was working in the arts lottery, my equivalent in the West Midlands was very involved in its development. Yet I've never been, so when a chance came to meet a friend in Birmingham, we drove over. What a fabulous space! Not the outside, which is too brutal for me, but inside, wondrously light and spacious with the extraordinary Garman Ryan collection. "It consists of three hundred and sixty-five works of art, over a third of them being three-dimensional works from many different cultures and periods around the world. It also contains a wide-ranging body of the work of Sir Jacob Epstein and many significant works by European artists such as Van Gogh, Monet, Turner, Corot, Renoir and Constable represented in prints, sketches and drawings as well as paintings and sculptures."

  What was particularly wonderful was the level of public engagement. It's in a shopping centre and there was a free rap arts and music festival going on, which attracted an audience I've never seen in a gallery before: young Muslim mothers with their children, teenagers with their chips. The collection itself offers wonderful opportunities too, with, say, an Epstein flower painting accompanied underneath by a jigsaw of the same painting. Inspirational. Oh yes, and completely accessible too.

Down and out in Devizes

I hate my bulging tetra tummy with its sagging muscle. Physability suggested buying a NeuroTrac. "The NeuroTrac™ Sports XL is a professional unit that has a wide variety of functions including muscle building, toning, rehabilitation and cellulite reduction.
Five segment programmes can be customised to meet the most demanding user". So I've been attaching the electrodes and stimulating the muscle, especially on my tummy. Big mistake. It's sent my stomach into strong spasm which cripples me. Every time I move, my stomach spasms and either pulls me forward or limits my range of movement. I'm falling far more and I can barely transfer. I can lift only a couple of inches, so anything more than a level transfer is impossible. I also managed to cut my upper inner thigh, just where I sit, so real fears of a pressure sore but hard to stay off it. Hospital's recommendation is full time bed rest (not going to happen), increase the baclofen, stop the stimulation, try strong stretching. None of it is making a huge difference. For the first time since leaving hospital, I feel disabled and I hate it.