April 2008 Archives

Well, folks. It's up. My first contribution as a columnist on Ouch! the BBC disability website. I hope that I'm not attacked by a gang of irate medal contenders who feel that my attitude is, well, that of someone who knows that they are destined to always be mediocre in any sport undertaken. With this in mind, I feel obliged to offer a clarification, especially as I will no doubt fall under a hail of disabled rock climbers abseiling down on my ass.

Not only do I have no problem with people who achieve such a high level of expertise in their chosen field, but I too find them inspiring. My point is merely, some might say trivially, that we can't all be the best. It's just not possible. A pyramid, by definition has a pointy top, and that's where the best Paralympic athletes reside. They have to be the best, as anyone who's attempted to push a wheelchair up a pyramid will tell you.

Just as you don't have a 100 meters for people who are a bit crap at running, there has to be canon fodder in every sport.  But there are occasions where, unbeknown to the elite, the canon fodder get together and enjoy pretending that they're actually pretty good. And if they hadn't had that knee injury or tennis elbow or gone to college or work or prison, they could have made it into serious competition.

It is this level of sporting competition that I miss. But hopefully tennis will provide me with that thrill. The local park, way too much kit and the complete deterioration in the standard of play as soon as anyone's watching. Ah, you should have seen my last shot...

Found this on 'the tube'. Interesting application of existing technology, and one that I had wondered about. Shame we don't see him handle the stairs, though. And it would be hilarious to watch someone with no trunk stability on it. Just me on that one, eh?




On the techie front. Anyone out there who knows how I can score a set of GradeAids (also called HillHolders, I think), please let me know. It's basically a small device that allows your wheels to roll forwards but not backwards. it would make hill climbs 50% easier! There's also this application of them...

 

Monday was a long day... The trip to the BBC in the morning, where I was shown to a small studio with a microphone and a pair of headphones. Headphones on, a voice comes over the line, saying, "We'll be putting you through to the studio in one minute." With no clue as to the format of the interview, or how long it will be. First up was a one to one with a presenter, which went OK, but I didn't know how long it would be going on for, and just as I hit my stride, the interview came to an end...

Second one. Over the headphones, I heard a phone-in discussion about experimenting on animals, where a contributor is told to ,"Stay on the line, because in a strange sort of way the next story links to what you've just said, so I know you'll be interested."
The caller had been talking about decompression testing on goats, so I was rather confused and concerned as to how I was going to make my story 'link'.

Thankfully, it didn't really, but instead I spoke for a few minutes, only to hear a neurology consultant come on the line who sounded much more uncomfortable than me. He'd probably been expecting to talk about exploding goats, only to hear about some guy who'd fallen out of a tree, which probably doesn't really count as decompression. It worked out OK in the end, and he did give the book a really positive plug.

The last one turned out to be a pre-record for later in the week, which made me feel much more relaxed, and by this stage I'm a seasoned professional (media whore).

Interviews over, I waited for my car (oh lah-de-dah!), sitting next to Paul Morley. I took a moment to tell him,
"I just wanted to say that I really enjoy your writing."
"Oh, right. Thanks."
Awkward silence, during which I should have mentioned that I've got a book out. You know, the 'I'm a writer too' conversation, but I didn't , and so we sat and stared straight ahead, while The Wombats got picked up from reception for a live slot on BBC 6Music. I'm guessing that's who it was, unless it was a bunch of fashionably dressed young men clutching guitar cases that, according to the description stenciled on them, actually contained wombats.

Home again, in time for the morning coffee to fully wear off, and by late afternoon, I was feeling pretty shattered. I managed to start work on a piece I'm writing (more nearer the time), and tried and stay awake, but it was a struggle. The old pain was really kicking in by the evening, and so I had a small glass (or two) of Shiraz flavoured  complimentary medicine, which didn't help on the button-bright alertness front.

Finally, at about 11.15pm, I had and extended interview with Radio New Zealand which I'm just listening to now, as I have no idea what I babbled about. Maybe it's better if I don't...

I did have a bit of a dummy spit, didn't I? You know, all that stuff about Amazon reviews. It wasn't me, it was the drugs talking. OK, so the medication in question was a sleeping tablet, rather than a 'get the hump because no-one's reviewed your book' tablet, but there's not alot in it, I assure you.

This week I was measured up for my new tennis wheelchair, which will undoubtedly make me a fantastic tennis player. Next week I hope to be measured up for a new 'get filthy rich' wheelchair, or maybe even a 'don't need a wheelchair anymore because I can walk again' wheelchair.

Tomorrow morning I'm off to the BBC for a series of interviews for BBC local radio, starting with BBC Radio Leeds at 10.30. Could be interesting, especially as (now then, now then, guys and gals) Leeds is of course the home to Stoke Mandeville's own Sir Jimmy Savile, so I'm sure he'll come up in conversation, or 'chat', as I'm sure it's known in local radio argot.

Next up is BBC Southern Counties Radio at 11.30. Could be interesting, especially as the Southern Counties are the home of, well, Surrey and, er... Sussex.

Then, at midday I'm doing BBC Radio Bristol.
Obviously, I'm doing all of these interviews from BBC studios in London, rather than actually traveling to the regions. See, I've got all the lingo. I also have a horrible feeling that the wonders of digital radio could mean that it's possible to listen to local radio, even when you're not local. Now I'm sweating.

But before tomorrow comes tonight, and another bout of pain (yawn!), but this time rather than Spike, it's just the usual assortment of twinges that seem to come in whenever there's damp weather. All that "feel it in me bones" stuff seems to be true, bizarrely. Something about low pressure? I dunno, really. All I do know is that if all else fails, I could have a career as a weather man. By which I mean I could be kept in the garden, and wheeled in to see what the weather's like. If I'm wincing and swearing, then there's low pressure coming in, if I'm wet, it's raining, etc. These are the kind of helpful ideas that the Government could employ to get people off incapacity benefit.

Right, I'm off for some dinner, and then hurl this sorry carcass into the sack, so that I am in some kind of shape to dazzle on the airwaves, where I can shine. Remember:
 "Many a scarecrow serves as a roost for the enlightened crow."
I'm not really sure either, but it sounds good, no?

Yep, my old friend Spike has dropped by for another visit. So as I sit wincing and waiting for the sleeper to kick in, I thought I'd use this most inappropriate moment to log in and rant about the complete lack of customer reviews of my book on Amazon. (this is a real struggle. I'm even typing slurred now. apologies.)

It's not been a great week so far. Oh, the newspaper coverage has been great, and I may have scored my first commission to write some stuff, which is fantastic. But yesterday my daughter kicked me in the head (I was lying on the couch at the time. She hasn't developed a leaping roundhouse kick before she's three) and then I fell out of my wheelchair in the kitchen for no discernible reason. It just happens sometimes, even after three years in a chair.

And now? Well, my personal equivalent of Winston's black dog of depression is a bull-terrier of neuro-pain trying to gnaw it's way though my left leg. For those who are new to my story, I am referring euphemistically to the neurogenic pain that I live with since suffering a spinal cord injury. I do not have an excessively unruly and very hungry pet under the desk. Although if I did, I wouldn't know until I spotted the blood. At which time I would summon my daughter to dispatch the violent canine with some fiendish manouevre.

Of course, the ever reliable late season collapse at the Arsenal hasn't exactly buoyed my mood either. Still, transitional season, no-one expected us to finish higher than 7th, young team, etc, etc. (It's not even making me feel any better either.)

See, I knew this was a bad idea. Someone out there write me a review on Amazon, and end this awful drug-addled drivel.

Finally, a picture of happier times, at the book launch last week. And, by the way, I haven't suddenly remembered a bit I'd left out. I am in fact signing the thing. In long hand, and totally illegible too. Special secret training is given to Doctors and authors.

Message ends.

This time in today's Daily Express. A good piece from an interview I did back in early March. So far no sign of it on line, so I can't send a link to it for those overseas readers.

First in an occasional series...
"Slower digestive transit", according to an add for bio yoghurt. Constipation, I'm guessing.

I was just wandering around Flickr (come on, we've all done it), and I stumbled upon this set of pics. Now, as I'm sure you may have realised from previous missives, I'm an enthusiastic participant in wheelchair sport, but I have to confess, this one has rather got me stumped.

From what I can gather looking at the sequence of pictures, the game begins by throwing people around in such a way as to ensure that they will need a wheelchair before too long. Once this has been achieved, two teams of wheelchair users attempt to strip each other while the referee (who is on roller skates for no apparent reason) is attacked by some guy dressed as a giant dog. Then two people in hockey masks attempt to stuff giant marshmallows down each other's shirts. Then the ref hitches a ride from the nearest wheelchair, while players try to gain bonus points by licking their opponent's elbow, before they all grab a stick each and try and bash the crap out of the guy who got the most marshmallows. Oh, and then someone in a wheelchair hits a ball with a stick, despite the referee's intervention.The final whereabouts of the man dressed as dog remains uncertain.

And finally, a huge thank you to everyone who came to my book launch yesterday. I struggled through today feeling somewhat overhanged, but still genuinely moved by all your support and encouragement. Ta.

And so... the day is upon us. Launch party at Waterstones book shop in Islington, London, 6-8 pm.

Smoke 'em if you've got 'em (only make sure you do it outside, what with the smoking ban, and all). Sound of plaintive harmonica drifts over the scene, as I sit in thoughtful pose, polishing my fountain pen (a gift from my mother), and making sure it's loaded.
The books have arrived, the drinks are due to land just before us, and then we have to work fast, loading the fridge and setting up defensive piles of books before the first wave comes in.

Enough. All I really have to do is try and nail a signature that looks the same twice, and speed my handwriting up to cope with the highly absorbent paper. Nervous? Moi?
You betcha.
I have made a few notes as to what to say, but I fear that I may be the only wheelchair user there, which could be rather embarrassing. I'm hopeful that there'll be at least another two, and I'm not sure what the problem would be if I was wheeling solo, it just seems right to have a few others around too, if only to show that I have made friends in the last three years of membership of the Spinal Cord Injuries Club.

The only thing I haven't done yet is slap plenty of ibuprofen gel on my neck, as there are not going to be many chairs for A.B.s to sit on. Which reminds me...

One of my first encounters with a public servant after my injury was at a benefits office, when this very helpful and rather nervous lady of about fifty started to give me the information I needed, only to stop suddenly and say out loud, "I'm just going to sit down so that I have come down to your level."
And I thought, "It doesn't really work so well if you TELL me why you're doing it."
Ah, the joys of disability awareness training.  I shouldn't snipe, she was helpful, it's just that I find some people's nervousness about doing the wrong thing can often disable THEM completely.

I move out, offering a stiff necked salute. See you on the other side.

I thought it was about time I mentioned the gym that I avoid going to. Most people these days have a gym that they avoid going to. I usually end up there about once a week. It's called Ability Bow  and it's not your average gym. There are no preening, steroidal young men noisily throwing free weights to the floor (If it's too heavy, why did you pick it up in the first place?), and the staff aren't busy preening themselves or looking bored because you're not about to lift the equivalent of an elephant over your head three times.

But that's not the main difference. The main difference is that I found the gym when I was referred there by one of the neuro-physio team at my local hospital. The people who work in the gym are trained and experienced at dealing with people who are exercising as part of a long term recovery programme, or to reduce long term health risks and improve quality of life. That's not to say that you get an easy ride. But they assess clients accurately and allow you to be more ambitious if you wish.

The gym was originally funded by Sport England and the National Lottery, and despite having many people referred to them by local G.P.s and having a waiting list of around two hundred, they nearly closed this year because of a lack of funding. Although people within the NHS could see the benefits of referring people to the gym, it didn't stretch as far as allocating funding, and it was only at the eleventh hour that the local NHS trust saw fit to come in with interim funding. Hopefully this will be made more permanent in the near future.

The thing is... Aging population, poor follow up after hip-replacements or stroke, or any chronic or degenerative condition, etc. Places like Ability Bow should be available to everyone. The small amount of investment required to train people in existing gyms (and that means proper training. Not places that won't take referrals if you have any long term health issues) or to set up places like Ability Bow would be realised in the savings made to the health service as a whole by enabling people to make more of a recovery  or to live more active, healthy lives. Trouble is, the beneficial results won't be seen immediately or very visibly and so the emphasis  will remain on headline grabbing initiatives and endless restructuring.

Oh bugger. This means I'm going to have to go to the gym tomorrow.

So, we're out for dinner last night, the missus and me, and we manage to stay out until about half past nine. As parents of a toddler we have lost the ability to eat slowly and savour, instead wolfing food down in case a small person tries to raid the plate.

So, we return home only to find a Hackney Council van parked in my Disabled space outside the house. I toot my horn, but to no avail, and I end up parking down the road. By the time we get to the offending vehicle, there is someone sitting in it, doing paperwork. Upon seeing me, he winds the window down, and says, "I'm really sorry, mate. Really sorry."
"Well, it's a bit late really. I mean it's no help to me. It's a bit inconsiderate."

"Yeah, really sorry."

We turn and start towards the house, whereupon he continues,
"My mother recently passed away, and she was disabled."

What am I supposed to do with that? Is this empathy? Should I feel guilty? Surely he would be even more aware of the issues surrounding disabled parking places?

It's not the first time that I have had people defend their parking by referencing some disabled relative or other, as if this somehow rubs off, and gives them justification to park in a disabled bay.

I'm not trying to establish some kind of 'inner circle' of disability, and I don't care how close I am to the shops, it's just that without a wide bay, I can't get the effing chair our of the car. simple. It's not about Auntie Ethel's gout or Great Uncle Richard's dickie spleen, it's a simple question of access.

 

"Than to be overlooked." Mae West.
Quoth? I'm not Quoth, just a little quonthused.
Bad puns over with, I had my latest round of meeja contact this week, with a questionnaire on the BBC's disability website Ouch!  It is my first real contact with disability oriented media, and over all I think it went well, with a tiny caveat. I said that some people were expecting the book to be a bit 'Jokey Blokey' (c) E.F.L. but that they were surprised when they found the book to be more personal and emotionally open, etc. Unfortunately, this made it into the interview as me having written a Jokey Blokey (hopefully I won't hear that expression again. Ever.) book.

The encounter was also interesting because it brings me into contact with a community of which I am a part, but very much a novice, when compared to people who have been disabled all their lives. It reminds me how I somehow manage to get the nature and date of my accident into the conversation within 5 minutes of meeting someone for the first time. As if I'm saying, "I'm not normally like this, you know."

And then, when I talk to other disabled people, I just feel a bit rubbish, as if I am falling between two stools.

So, the other plug for the book came in a newsletter for Back Up. It's good to get a mention for the book and obviously the blog. (Enough links, already)

Other news... More pain. It's been a bad couple of weeks in this regard, having been reduced to tears on one occasion. I think it's progress from being reduced to whisky, and hopefully will prevent me from being reduced to a jus. The tricky decision to wrestle with is whether to have further surgery, in the form of a cordectomy (complete severing of the spinal cord). The reason for this is that my L1 vertebra wasn't fully re-aligned after my accident, and is therefore trapping my spinal cord, causing it to stretch when I bend, which could be a contributory factor as far as pain is concerned. The compressed cord also increases my risk of developing a syrinx which could in time affect nerve bundles further up the spine, and increase my paralysis. Scary thought. The thing is, as with all of this stuff, there are no guarantees. No guarantee that I will or won't develop a spinal cyst, or that my pain will be improved or worsened. Why are these things never clear cut (bad pun)? Another 'we like to think' moment, I know, but we do think of our bodies as machines and our doctors as mechanics, mainly because the whole messy, organic, inconsistent way that our bodies work is rather too frightening to contemplate.