Live your potential

Sailing into the distance

I'm near Keswick in the Lake District for a week long Back-Up sailing course. There are twelve of us: five people with spinal cord injury (including one of the two leaders), four buddies and two carers. The course itself is run by and based in the Calvert Trust by Bassenthwaite Lake. I'm happy in the Lakes, and happier than I expected. I used to do a lot of walking and camping here. Before I came I wondered whether I would be upset that I could no longer walk high in the mountains. I'm not. I may be ignoring something but I don't think so: I'm simply grateful that I can be surrounded by such beauty. I feel at home here. Looking at the dark rocks and purple gorse and green bracken and black water I feel deeply peaceful. I plan to read, write, sail and learn new skills.

Yesterday was our first day on the water. Because I've sailed a little before, I was given a Windrider to sail. It's a 12 foot, broad beam trimaran with space for two sailors, a main, jib and dual controls. And it's pretty fast. With unexpectedly strong winds, we cut through Bassenthwaite Lake far quicker than I'd expected. Water sluiced over the deck and I was glad that the boat couldn't capsize. The problem was tacking: without a reefed mainsail, there was too much power. We couldn't turn into the wind, only away from it. Which meant we got further and further from the boathouse. Finally the rescue boat came to get us, took us back to reef the main and then I went out again, this time with one of the trainers. I wanted to discover what I'd been doing wrong. Nothing, it turned out. We had exactly the same problem although we found a compromise solution that allowed us to return to the pontoon after a fabulously exciting ride. It's going to be a challenging week.

Equal and opposite

In yoga, it's a good idea to do counterposes. So you should follow a forward bend with a backward stretch. It eases the muscles and offers an opposite energy flow (well, that's how I see it).

I've unconsciously been following Griffin's high-rope walking and climbing with falling and low-floor dragging. As I turned over last night, my legs locked in a spasm and threw me out of the bed. Put on shoes, drag over to trunk, lift on step, trunk, chair and back to bed. It takes about five minutes. The same thing happened this afternoon. I woke from a doze, reached out for my faraway chair, overbalanced and...fell off the bed again. More dragging, trunks and transfers.

I think I've done enough counterposes now.

Cirque not so invisible

Last week (after supper at Skylon) I went to see Cirque Invisible at the Queen Elizabeth Hall in the South Bank. It's the third time I've seen them, a contrast to my usual approach of always trying to see new companies. I don't think I've ever seen a single company more than twice before this. The first time I saw Jean-Baptiste Thierree and Victoria Chaplin was over 20 years ago in the now closed Mermaid Theatre. I next saw them at the Riverside Studios, and now here.

They have not aged well. Or maybe it's because I've seen so much circus now that I've got very specific preferences. I like close-up work, work that doesn't involve special effects, work that doesn't use standard equipment such as trapezes. This was close-up (we were in the front row, close enough to catch an orange thrown by Jean-Baptiste, close enough to fear that one of the rabbits might leap onto my wheelchair). But unfortunately it was so close that I could see the workings of the magic tricks: I could see the false bottom in the jar when a handkerchief was pushed in, I could see the way a coin was hidden. Perhaps Jean-Baptiste was getting old and slower. Perhaps showing the workings was deliberate. Perhaps it would have been more exciting from further away. I just know I was disappointed.

I did enjoy watching Victoria Chaplin's transformations from tea-drinker to dragon, from cyclist to mermaid. I was charmed hearing children's cries of excitement and delight. But the show as a whole didn't work for me. As Heracleitus said (yes, I did study Classics at university), you can never step into the same river twice. It's a maxim I should bear in mind the next time I try to recapture a magical experience.

(Not) climbing to great heights

I'm sitting in the Moors Valley Country Park near Ringwood watching Griffin, his friend Isaac and Isaac's mum leap onto zip wires, walk across tree-high tightropes and land in crash nets. They're on a Go-Ape range, three hours of a very safe and very high rope course. I'm filled with pride at their tenacity, courage and technique. I wish I was up there with them but I'm not as sad as I might be because I've done it before: I did the same course in the Lake District seven years ago.

It's a fabulous park. I've borrowed a cross-country electric wheelchair so I can follow Griffin and friends from beneath. I'm surrounded by pines and greenery and soft earth. And as an added bonus I have a cappuccino by my feet with my book to read if I get bored. Luxury. I'm impressed by the facilities here. My £4,500 wheelchair is free to hire (take note, WOMAD). Children and adults can hire bikes and bike trailers. There's a handcycle available at times. You can fish. Access is great, with flat surfaces and gentle ramps. Food is delicious ("Cornish line caught sardines on crostini with home made salsa"). Arden is too small to do the Go Ape course but we'll definitely be back to cycle around the park for the day.

Eating at a great height

I went to Skylon last week. "Located within the Royal Festival Hall, Skylon offers a spectacular panorama of London's skyline with floor to ceiling windows overlooking the River Thames. A destination restaurant and a relaxed, informal grill centre around a raised bar serving classic and contemporary cocktails, perfect for day and night".

It lives up to its description. The meal was one of the best I've had for a long time, especially the chervil and goat's cheese soup, an unusual and delicious combination. The fish was perfectly cooked, the sorbets wonderfully cleansing, service immaculate. The table height was good and the floor wonderfully level. So far, so good.

However, getting to the restaurant was a different matter entirely. We started from the riverside entrance and caught the wheelchair lift up to the first floor. Well, what we thought was the first floor, except it turned out to be a kind of waiting area with steps up to the main lifts. Back down to another lift which went to the third floor, the entrance for Skylon. However, there were steps down to the restaurant. So back down to the first floor and push across to another lift. This one seemed to go to the third floor and the section we need. But no, it doesn't stop at the third floor, only the right-hand lift does. And that wasn't working. The service lift was locked. This whole process has taken at least ten minutes so far and my frustration is rising. Finally, we see another service lift with a staff member inside. We squash in and finally, finally get to the same level as the Skylon entrance. What an appalling start. Surely it would not be that difficult to label lifts so that this situation is avoided? The only information on the restaurant's own website is "Step-free access to Skylon is available from the Royal Festival Hall Foyer". I don't think so.

Update:

I sent Skylon an email following my delicious meal with disappointing access:

Dear Skylon

I came last Friday (7^th August) to the Skylon restaurant for a pre-theatre meal. It was exquisite. The food was superb (especially the perfect chervil and goat’s cheese soup), the service excellent and the price reasonable. I was delighted with the happy birthday plate I had requested. However, getting to the restaurant was a different matter entirely. I’m paralysed and a wheelchair user. I had warned staff in advance. However, it must have taken me at least ten extremely frustrating minutes to get to Skylon from the riverside entrance of the RFH. The first lift took us to the third floor but one with steps down to the restaurant. The second lift didn’t stop at the third floor. The adjoining lift, which did stop there, wasn’t working. The service lift was locked. We finally managed to get to our destination (late) by cramming in to another service lift with a staff member.

The same situation happened in reverse when we left. We asked to be directed to the QEH artists’ entrance and were told we would be met by a staff member. No one met us. Following the directions given at the restaurant took us to the main entrance of the QEH. We then had to be escorted round to the artists’ entrance. This meant that we were ten minutes late in reaching our seats and the show had to be held up especailly for us. It was a sour end to a fabulous evening.

Please can you let me know what you inted to do to make any future visit more pleasant? At present, whilst I would love to sample the food once more, I feel no inclination to struggle against the lifts to reach the restaurant.

I look forward to hearing from you.

I received the following impressive response from Simon King, the general manager:

I was recently given your email and although it was nice to hear how you enjoyed your birthday with us at Skylon I feel very embarrassed with how difficult you found both arriving and departing from our restaurant. I’m so sorry that you had this inconvenience, we are somewhat misfortunate that Skylon being on level 3 has no direct accessible access other than this one lift that was not working.

We do have an agreement with the Royal Festival Hall that a ramp is to be fitted to the adjacent stairs to allow guest direct access to the restaurant from another lift, which we sometimes use for large wheelchairs do not fit in the main lift. I have spoken to the Royal Festival Hall about this matter and they now know if the lift on the riverside entrance is out of order other arrangements must be made to maintain constant access. Fortunately these lift are pretty reliable and rarely are out of action for very long, however this experience has reminded us that we need to react when things go wrong and I have informed my staff of the necessary procedure.

Thank you so much for taking the time in giving us your valuable feedback, I do hope you still managed to enjoy your birthday. I would like to reassure you that the access to Skylon is usually very good and it should not deter you from future visits. I do hope that we will see you again at Skylon, please do hesitate to contact me directly and I will take care of the reservation myself

Best regards

Simon

Grieving for my body

Last week, I finally understood why I'm very unlikely to walk again. I was at Bodyworlds, the controversial exhibition of preserved bodies donated by individuals. There was an exhibit titled The Chess Player, a man bent over a chess board, his back cut open and spread to expose his spinal column and cord. I could see the bundle of nerves running from each vertebrae and how complex everything looked. I've always wondered why everyone with a spinal cord injury, no matter what level, is likely to have the same bladder, bowel and sexual function problems: there's a huge tangle of nerves right at the base of the spinal column that control all these functions. No wonder I can't walk. It's amazing my body can function at all. I wept as I looked at the chess player, not so much at the realisation that I wouldn't walk again but because of the damage my body had sustained in the accident. One of my vertebrae (T3) was crushed and isn't there any more. I broke three ribs, my sternum and collarbone. I damaged my brachial plexus. And I severed my spinal cord. Seeing the chess player's back brought the reality of it all home.

A couple of other things got me thinking. First was The Skin Man, a man holding his skin, still with its lines on feet and hands. The largest organ in the body, you can see how the skin clothes and protects us. And then the brain stem. In contrast to the beautiful flower shape of the main brain, the stem is plain and dull. Yet it's responsible for core functions such as breathing. I imagine this is what picks up the messages from autonomic dysreflexia: it certainly looks as if it deals with base responses. So, a fascinating exhibition. Way too much to take in, I only managed about half and will need to go back another time. It's in the Dome, sorry, O2. Having worked for its main funder, the Millennium Commission, and having been a loyal supporter, I can't see the space as anything other than the Dome. Easy to get to, easy to park (the first time anyone's ever checked my photo on my blue badge), good access. Appalling signage and horribly commercial - the place feels more like a North American mall - but Bodyworlds is great value at £14 and there are many two for one offers online. And I wasn't disturbed or upset by the bodies. They didn't look real. Definitely worth a visit.

Sailing further away

I went to Cowes on Wednesday to watch boats racing in Cowes Week. There was loads going on and getting around was pretty easy. Pavements are smooth, pontoons are ramped, distances not too great. I first went as a wheelie two years ago on a solo day trip from the Spinal Unit. I'd caught a bus to the station, train, bus to port, ferry to East Cowes, a long push to West Cowes to watch the racing, then a combination of fast ferry, bus and train to return to the hospital. It was a long day and as I wandered round this time, I felt real pride that I'd managed it when newly injured. Driving to the ferry terminal this year felt a bit like cheating.

The weather was mild. Good for me but not for the racers who struggled in the windless conditions until afternoon squalls arrived and increased the drama. I was thrilled to see an Artemis 20, a new high-performance dinghy designed for racing by disabled and non-disabled sailors alike. They looked fabulously exciting. If I ever have a spare £20,000 I'll be buying one.

Ballroom Blitz

Last Friday I wore my dinner jacket for the first time since leaving university. I'd been invited to the Salisbury Hospital Summer Ball in my official capacity as Patient/Carer Governor of the Foundation Trust. I had a brilliant evening though I resisted the charms of dancing to the Salisbury Big Band.

Not for the first time I was aware of the status I have as a governor. I was sitting beside the Chief Executive, opposite the Chairman and beside a Non-Executive Director. A doctor who had been outlining the evening's programme with wonderful fluency became surprisingly quiet when thanking the governors for attending. It made me think about the hierarchies within hospitals and that as a governor, I'm near the top. I find it easy to talk to pretty much anyone so I'm surprised when people seem intimidated by status.

I had many fascinating conversations. I learnt about the food used in fish farms and how a Vietnamese catfish contributed to the closure of a cod farm in Scotland. I heard an unusual suggestion for how to defeat the Taliban ("buy up the entire poppy crop and sell it to the pharmaceutical companies or burn it") and that the only way to avoid being blown up by a roadside bomb would be to drive a car the weight of a Challenger tank. I discovered that the Chief Executive had worked his way up from a minor staff role in the NHS to running the hospital by focused dedication. I decided to contribute to the inspiring appeal for a new Children's Centre at the hospital. And I found that I could still fit into my DJ twenty two years on.