Live your potential

Musical delights

Arden's orchestra was amazing at the National Festival of Music for Youth yesterday! They ran on, led by a girl with an olympic torch, to shouts of "We are the champions". Then the 80 or so musicians launched into the first in a series of five pieces about sport. They played beautifully.

Of the 18 groups playing, they were one of the best. Not the best - that prize should go to some of the extraordinary brass bands. Not the most topical - that accolade belongs to St Mary's RC Primary School Choir in London who sang a blistering piece about children's rights about the UN Declaration of the RIghts of a Child.

They didn't win, but what an incredible experience. The venue itself was easy to get around: good level access, accessible toilets (locked with a RADAR key, though a little too heavy to open with ease). Parking was a little too far away. Let's hope we're back again next year!

Proud Papa

Today we are off to Symphony Hall in Birmingham for the national finals of the Music Festival for Youth. Arden's orchestra, the West Wiltshire Junior Strings, has got through. It's the first time in fifteen years that the orchestra has managed it. They'll be competing against 17 other orchestras who have been whittled down from the hundreds who entered. And the winner from today will then perform at the Royal Albert Hall. We won't be joining Arden and the other parents on the coach: I can't get on. But Lilly has invited Arden to sit next to her and I'm sure we would only get in the way. To be honest, it's handy having the access issue as an excuse sometimes. After an intense and tear-filled week, I really don't want to have to make the effort of chatting to relative strangers. I don't know any of the other parents very well. A dozy journey with Annika driving is just what I need. Fingers crossed for the Finals.

Anonymity

I've never hidden behind a pseudonym when blog writing. I used to keep a regular blog when I had my toyshop, thetoyshopowner.com (I had to take it down as part of our business sale conditions, much to the frustration of a worldwide readership from New Zealand to Canada to Australia and the USA). I wrote that in my own name, with my photo, as I do this one. I think a blog is more powerful if there are no veils of secrecy, if you know who's writing it and what they look like.

Admittedly, I get the boundary between public and private wrong sometimes. On the toyshopowner I once posted a story that a colleague had told me about another toyshop. I hadn't realised that I'd been given confidential information, though I soon found out when I got a furious email from said colleague. Yes, it's easy enough to take stuff down but it's hard to know who's read the story and anyway, the damage is always done by the time a complaint is received. I've made the same mistake here.

But now that I'm the governor of an NHS Foundation Trust hospital, now that any member of the public can enquire about my expenses (work related mileage and food is all I'm allowed. Sadly for our ducks, no duck pond castles), now that one wrong post about a patient issue could lead to media involvement... I'm wondering whether I should be more cautious. I don't think so. I've always written this blog in the anticipation of being a teacher. When I write, I ask myself whether I would be covered by a public interest defence: would I mind if one of my pupils read it? Would anything I write damage the reputation of myself/my anticipated profession?

I don't really want to go through my hundred plus postings with a fine toothcomb to check. I'm pretty sure my subjects have been acceptable (I'm decidedly enthusiastic about the hospital. It did save my life on several occasions and I have a lot to be grateful for). I'm just mindful that it could be an issue. I'm going to flag up my blog with the Trust Chairman. I don't want to end up like the writer called NightJack, whose award-winning blog has now been taken down. Journalists, especially at the Times group - who seem to have a penchant for unmasking bloggers - are quick to justify their actions, though their words of "public interest" sound a little hollow to me, and their complaints about their own privacy being invaded smack of blind hypocrisy.

David Finkelstein writes: 'In politics there is a saying: “Don’t do or say anything you wouldn’t be relaxed about seeing on the front page of the Daily Mail” (a rule many MPs seem to have forgotten). If you publish a blog with the aim of entertaining people and even allow it to go forward for the Orwell Prize, you can’t be altogether surprised if your name gets out.'

If I suddenly disappear, that's why. It's been decided by the powers that be (whoever they are) that my blog is no longer suitable. That I'm at risk of putting the hospital onto the front page of the Daily Mail. Here's hoping that I'll still be writing for a few more years...

Happier third anniversary

Three years ago today I broke my back. I feel very different to last year. I wrote then: "I suppose I'm at the stage of acceptance. It happened. There's nothing I can do about it. I wish it hadn't. I wish I wasn't always in pain. I wish I still had my legs and normal bladder, bowels, sexual function, sensation. But I don''t and I am very unlikely to get any of it back. So why grieve? Might as well just keep on living".

A year further on, that reads like denial to me. I hadn't reached the stage of acceptance. I'm not sure I have even now, although I'm getting closer to it. I'm not always in pain any more. I'm less bothered by my lack of functioning legs and bowels. Sex is surprisingly exciting. Yes, I do wish I had more sensation. Yes, I do wish my bladder was more reliable. But that's it. I don't regret what happened. I could be so much worse off.

I found yet another good thing about having a spinal cord injury: I now have an edge in interviews or Board appointments. If there's no difference between me and another candidate, I've got more chance of getting the job - I count as a minority now, so will help an employer meet its equal opportunities obligations.

Being in a wheelchair also makes me more approachable. I was in Salisbury Hospital the other day for an appointment (let's skip over the fact that whilst I had put the new appointment into my diary, I hadn't deleted the old one so my trip to the clinic was, shall we say, very short). I had the beginning of a guided tour in my new role (it had to be cut short because of my trip to the clinic). And when I  sat down in the cafe, I had a fascinating conversation with my table neighbours. For about a minute, they told me about their recent excellent experience as patients. And then they told me about a far less pleasant experience for some 15 minutes. I suggested they write in to tell the hospital what should have been done differently.

Yes, it's a happier anniversary than last year.

(I did a google image search for "unhappy anniversary" and found this book cover. If you're curious about the 1957 Supreme Court ruling that led Daniel Mark Cohen to write his book, read the synopsis on Amazon).

Silence

Hard truths. Facing the facts. Tears. It's been an emotional few weeks to say the least. And I've been sharing some of my feelings with the whole wired world.

I've been out with lanterns, looking for myself. I think I've finally found traces. I need to sit with what I've learnt. And I need to sit quietly, so I'll be going dark for a while. No words till I'm clearer.

A Brief Encounter

On Saturday, we went to see Brief Encounter at the Everyman Theatre in Cheltenham. Directed by our friend Emma Rice, this Kneehigh show is now on tour, as is Don John, the show we saw several months ago at Stratford. Annika had already seen the piece: she saw Brief Encounter on its London debut, an ideal setting. It was staged in a cinema-turned-theatre. Unfortunately, the venue (in London's Haymarket, just off Piccadilly Circus) was completely inaccessible.

The matinee got off to an appalling start. All disabled parking bays were full so we stopped anxiously on double yellow lines. Then we had a truly disgusting meal. A fish slop pretending to be fish pie. A surly, grumpy waitress who failed to hear any of my requests or instructions. For the first time in my life I asked to speak to the catering manager. He tried to explain how the invisible breadcrumb crust was firm and crunchy. (I thought he was going to eat the thing from my plate to make his point). I cut him off and asked that he let me speak without interruption. "There's no need to be aggressive. I was just trying to explain", he replied. Oh dear. I think I need to improve my verbal complaining skills. Still, he was kind enough to refund the cost of the pie.

Then the show. The Everyman is a Frank Matcham theatre, built in 1891. The usher told me it was the oldest surviving complete Matcham theatre in the country. It's a fantastic space with reasonable access given the limitations of the structure. There are automatic doors to get in, accessible toilets (one with a RADAR key lock - an excellent way to prevent non-disabled people from dominating the facilities), reasonable sightlines. The ramp to the stalls is alarmingly steep and caution is required but at least there is one and it's perfectly smooth. I was impressed.

The show itself got off to a slow start as the performers sang in latecomers. Song after song. A lot of latecomers. It was a packed house of generally older people, some of whom sang quietly along with the musical introduction. But once the curtain was up, the pace was relentless. Emma and Kneehigh have an incredible voice. I've never seen a show like this. It's a mix of theatre and dance and circus and film. There were moments of breathtaking magic that had the audience clapping furiously. I've never experienced that in a theatre before, this spontaneous applause. It happened with a magical scene where Laura literally entered the film of Brief Encounter. At one moment, she was on stage. The next, she was in the film. It reminded me of the Woody Allen film The Purple Rose of Cairo where there's an easy fluidity between the real world and the world of the silver screen. I've seen the film of Brief Encounter. (One advantage of spending 14 months in hospital is that you get to catch up on all those movies you should have seen. Lovefilm delivered DVDs to the Spinal Unit, so I made my way through the British and American Film Institutes' top 100). But you don't need to have seen the movie to enjoy the play. In fact, the opposite might be the case. It was very brave and very high-risk to adapt such a beloved film.

I've read several reviews that have criticised Kneehigh for the "liberties" they've taken with the movie. It's worth remembering however that the Noel Coward estate allowed Emma to adapt the play on the condition that only the original words were used. She agreed. It's a heart-breaking story. Knowing what was going to happen made it difficult to watch. It's like seeing a car crash in slow motion. There was a moment of real poignancy where one of the secondary characters comments "it'll end in tears". I felt jarred: I know it does end in tears. And I was surprised to hear the audience collapse into laughter. I know the character says it in an amused and wry way but is it just a mundane affair? Given its intensity, I doubt. The nearly-lovers sacrifice their passion on the altar of middle class respectability. Laura returns, dead inside, to her solid and dependable and boring husband. Mundane? No.

What I found particularly extraordinary was how Noel Coward, a gay man, managed to perfectly capture the feelings and raw emotion of the nearly-lovers. Then again, as a gay man in the 1920s, who could have known more about the heart-break and impossibility of illicit love? I've never seen a show that reveals so much about love. We are told three different love stories. Young love, lust, unbridled passion. Moments of pure eroticism. Scenes of such sexual tension you could have heard a pin drop in the theatre. A mountain range of emotions from pure bliss to absolute despair.

I said the same about Don John: you must see this show. Beg, borrow, steal: do whatever you must to get a ticket. Brief Encounter is on tour. We drove over one hundred miles in our round trip to see it. I'd have driven for 250 miles without hesitation.

Accosted

I'm in London visiting friends. I've just been treated to lunch at the Bleeding Heart bistro in Clerkenwell. Nightmare of cobbles to get over. Caught a taxi from Paddington and the driver dropped me off close to the entrance so managed to avoid major body shakedown. And luckily it's hot weather so we could sit outside and not have to deal with toilet facilities (I have no idea what they're like. They may be amazing. I'm just happy not to have to find out).

The food was good but not breathtaking. Friends have given it high praise and I admit I was a little disappointed. My salad was excellent but basic. Lettuce, egg, bacon. Classic yet without the panache one might expect of such an establishment. The main course of haddock with petis pois, whilst perfectly cooked, was a trifle too rich. The mint tea poured from a silver pot was refreshing but the pot was not left with me.

Still, why am I complaining? The company was delightful, the conversation witty and nourishing. I'm in London without parental responsibility. I can ponder on the challenges I face being a governor of Salisbury Hospital (I'll write about it another time. Suffice to say, I had no idea when I submitted my nomination quite how important or serious the post was. The document outlining the roles and responsibilites of NHS Foundation Trust governors runs to fifty pages). I'm having a quick refuelling stop at Costa before meeting my next friend. I love this city!

Hard truths

I cried in physio today. I hardly ever cry. And today I cried so much that I couldn't get my words out.

The tears came out of nowhere. I was in the local hospital for my fortnightly stretch. I trust B, the community physiotherapist. She's helped me work on specific challenges at home (what's the best way transfer to the sofa, how can I get back up if I fall upstairs?). I now go the Devizes hospital every couple of weeks for a good leg stretch. B and I chat about the movies we've seen, what her partner has been up to. We get on well.

But we don't have the kind of relationship where I weep in front of her.

I was talking about my decision not to become a teacher. Then I mentioned a job at the Devizes Citizens' Advice Bureau that I'd seen advertised. It's a new post: Social Policy Officer, liaising with external partner advice agencies to identify issues affecting clients and to develop policy to address such issues. You need a strong sense of social justice, an awareness of the issues, good written and verbal communication skills. My work at the Millennium Commission and London Arts involved exactly this kind of challenge. I'm more than qualified to do the job. It would be fun too.

But it's full time. And as I was telling B about it, I realized I could not do it. My nights are full of pain and insomnia. As a result, my days require time to sleep, to stretch, to manage the pain. I need to have my weekly massage. Added to that, I've committed myself to be a hospital governor and school fundraiser. And I'm the primary carer for our children. Yes, I can negotiate time off to fulfil these commitments. Yes, I can argue I must have time off for massage as pain relief. Yes, we can get an au pair to help with the children. But none of this diminishes the reality of my exhaustion. I have to sleep during the day at least two or three times a week. And this realization fully struck home as I was talking to B.

My voice broke when I said "I can't do this job full time. I may never be able to work full time again. I'm actually having to come to terms with the fact that I am disabled". I'm not sure I've ever cried about the impact of my accident before. For the first few months in hospital I was completely numb. Then I plunged into coping with my inability to walk. The walking, to be honest, has never really bothered me that much. There are many ways round it. It's the exhaustion. I'm not the 38th fittest person in the country any more. I do not have the strength or stamina to effectively deal with my fatigue.

It may get better. I might find better ways to manage the pain and insomnia, which in turn will help the exhaustion. But right now, I'm feeling the real impact of my accident for the first time. As I write this in bed at four in the morning, awake because of pain and insomnia, I can't clearly see the screen of my iPhone through my tears. I want my life back.

Facing the facts

I generally ignore the fact that I have a spinal cord injury. I can do most things and don't feel that limited. However, I think I can take this attitude too far. Back in 2000, I ended up in the finals of a national fitness competition, the X-Zone. I came 38th, so in a way, I was then the 38th fittest person in the country (yes, I know it's hardly a true sample but it makes for a better story). And at times I still think I am, in a way, that same person.

I'm not. Obviously. But it's a state of mind - "I'm no different since my accident". I think this is about denying the reality of being disabled. I believe if I don't say it, then I'm not disabled, I'm not limited in what I can do (apart from climbing over fences of course).

The dysreflexia attack brought me up short. And I accepted for perhaps the first time since leaving hospital that I am disabled. I have a condition that can kill me very quickly. I don't have much stamina. I sleep badly because of pain. Long drives exhaust me.

Annika and I have been talking about this with regard to my planned teaching career. Every teacher I talk to comments how tiring the Postgraduate Certificate Course in Education is. It's full-time and there's no alternative at Bath Spa. The staff have been very accommodating, but there is a limit to what they can do.

In short, I've decided not to do the course. It's been a hard decision. Completing the PGCE has been a focus for the last two years now (I was due to start last September but I deferred). I've read a lot and been visiting schools. But I think it would be foolish at best to undertake the course. So I sent the University the following letter:

Dear L

PGCE Primary and Early Years 2009-10

I’m writing with deep regret to say that I will be unable to take up my place on the PGCE Primary and Early Years course this September.

As you know, I’ve been concerned about my stamina. I have already deferred my place by a year to try to increase it. I’ve spoken to P and H who have been wonderfully helpful and supportive. P has come up with a number of excellent suggestions to help me manage my fatigue, such as postponing school placements if need be. I’ve been very impressed by her assistance, and especially by the way she made it clear that my situation was not unique and that I was not causing any difficulty.

However, a number of events have occurred that have forced me to reconsider. The most serious was a recent attack of autonomic dsyreflexia. This is something that can affect people with spinal cord injury and it can be fatal. Obviously it wasn’t on this occasion, but it was very frightening and took almost a month to fully recover from. There’s no guarantee it won’t happen again (in fact, it’s unfortunately quite likely it will). To lose a month on the course would be untenable.

Furthermore, my stamina is simply not increasing as much as it needs to. All my teacher friends talk of how exhausting the course is. I’m not working at the moment and even so still need to sleep each afternoon for at least an hour.

The final reason is childcare. My wife has recently been promoted in her company and is now often away from home. Before this, we could have juggled childcare for the course. Now, however, it will be impossible without a nanny or an au pair and given what the children have been through in the last few years, we don’t want to impose further change and stress on them.

I am hugely disappointed that I’m not going to be able to do the course. I’ve been looking forward to it so much and do think I would be a good teacher. I’d also be a good role model in terms of what’s possible in a wheelchair (pretty much everything really apart from dealing with shelves and leading PE classes!).

I will be volunteering at my daughter’s school and will continue to read about education. But I will not become a teacher it seems. I am so sorry that I’ve had to withdraw at such a late stage and do hope that my place can be re-allocated.

Let me finish by thanking you and your colleagues for the opportunity you offered and the wonderful support, encouragement and patience you have shown me. Please do get in touch if you need any further information and/or if I need to do anything more formal.

I received a touching response:

Hi Andrew,

L passed your email and letter to me so thought I would drop you an email to wish you all the best for the future. Thank you for your kind words and for letting us know you won't be joining us. We are sorry you will not be with us but fully understand the reasons for your decision.

Remember Andrew, it is for the time being that you won't be joining us and if in the future your health improves and stabilises you are very welcome to apply again. The teaching profession would benefit so much from having you as part of it, so please keep us in mind. All the best for the future Andrew.  We all wish you well.

P and all the team here at Bath Spa University.

Heartening. So if not teaching, then what? Well, in the short-term, fundraising for Griffin's secondary school and a few local charities, being a governor of Salisbury Hospital, volunteering, being a househusband. The most important thing to do is make sure I don't sit around at home. But really, I'm not that kind of person.

Blessed

I feel so blessed to have my children. They're sparkly, hilariously funny, bright, passionate, quick, curious, polite, charming, thoughtful, generous, kind and fantastic fun to hang out with. They accept me as I am, warts, wheels and all. My life would be very different without them. I would be coping far less well if they were not here.

Annika is in Washington for a couple of days. The kids and I went to see Night at the Museum 2 in the Swindon Empire with its gleaming new automatic doors, courtesy of me, although I was a little disappointed to observe there was no plaque with my name on it. The film itself was real fun (and free. I had two vouchers and Griffin went as my carer, using my CEA card). Yes, it was completely predictable. Yes, the story was very simple. But it was great. I laughed a lot.

Later that evening Griffin had Tae-Kwondo in a nearby town. He's a black stripe and cannot take the next grade, black belt, until he's fourteen. I'm in awe of his incredible determination and discipline. Arden and I waited in the car, playing Super Mario against each other on the Nintendo DS. She thrashed me at five of the six games in the tournament. This is the gorgeous girl who is a great horse rider and who plays first violin in a junior county orchestra that has reached the national finals of a music festival. She'll be performing at Symphony Hall in Birmingham on 6th July.

I could not be more proud of them both.

When Griffin finished his training session, it was late so, as agreed, we came home via a drive-thru MacDonalds for supper. It's a rare treat. The last time we were here was in January. I had my first ever Big Mac, surprisingly tasty. I'd been a vegetarian for 20 years until 2006. In hospital, they told me I had to eat meat or die. Despite the impact eating meat has on land use and on the global economy, I decided to follow their advice. As I was munching my Mac, I wondered if I'd missed anything.

We drove back fast on the dual carriageway, iPhone plugged into the stereo. Griffin had chosen Van Halen's Jump. It was playing at full volume and we were singing loudly along, heads banging (well, nodding).

A perfect day.