Live your potential

Standing on my own two feet

  I'm bored of sitting down all the time. I'm frustrated by the powerlessness of being seated when everyone else is standing. I'm tired of craning my neck so I can converse. I want to move to a higher level.

It's time to buy a standing chair. At a cost of over £4,000 I'm going to have to do some fundraising, but I want to look people in the eye. I particularly notice when I'm networking - I find it far harder to talk on an equal level when I'm some two feet below everyone. I've talked about language before and it still strikes me: people talk down to me, I can't stand up to them, I can't take a stand, I can't stand on my own two feet. Obviously, this is only true in the most literal sense, but now that I'm in a minority, the language of the majority does not fit in the way that it used to.

A friend came up with a brilliant solution to addressing the power balance in the short-term: fix a lightweight folding stool behind my chair. When people are towering over me (and perhaps feeling awkward, unwilling to crouch because of its associations with talking to children), I can pull out the stool and offer them a seat. I'm fascinated imagining the reactions I might get...

"Sexy models to sell wheelchairs"

I'm following @disaboom on Twitter. A recent tweet they sent out links to an article that begins:

"Colours In Motion wheelchair company has been the forerunner in the entire industry to use edgy advertising to sell medical products. Their “edge,” not surprisingly, is sex. Sex being brought to mind using hella sexy models that is"

Sexy models to sell wheelchairs - interesting approach. And they're all disabled. For the full article, click here.

(The piece is generating opinion. "Macdoodle" writes in a comment on the post: "i want to know what equipment works has a good maintenance record for the least money. her dancing is great! and realistic! though i couldn't do it. She is beautiful and i see why she is in media.. ........... but this- ................ when i see sex doing the sales i always wonder especially if the representation is unrealistic. This woman has been "placed" in an unnatural pose she and most could not get in and out of,including me.......... i think it's a disservice to the community, when the ads raise the level of expectation to far surpass reality.")

Yes, I am fat. But cheap.

I'm vain. I used to be fit, thin, fast. I'm none of these things now. I find my fat tetra tummy hardest to cope with. That said, it's more a state of mind: I used to have a 32 inch waist and now it's 36 when I lie flat. But it has implications: too fat means new wheelchair. This was the message I got when I had my last assessment at the Spinal Unit.

I was bought a Quickie Ti, a super-lightweight titanium chair, by a rich Canadian friend, rich (and generous) enough to afford the £4,000 price tag, including extras. The Unit's response when I mentioned that I couldn't possibly afford a new wheelchair was: "well, it's your skin that you're putting at risk". So for the last few weeks, I've been wondering what I could do. Could I recycle parts of my existing chair, such as the wheels, the footplate, the brakes? How could I find that sort of money? I wasn't sure I could ask my friend for another wheelchair 18 months after he'd purchased the original.

Today I managed to speak to the people who sold me my Quickie. "No, you can't recycle much of your existing one. It would be cheaper to buy a whole new chair. Quickie's have gone up in price, but a cheaper titanium version would cost around £3,000". Great.

We talk more about why I need a new chair. "Oh, you're only eleven and a half-stone? And you need a new chair because your legs are rubbing against the wheels sometimes? Well that's OK then. Your chair is fully adjustable. You can change the wheel settings. Or if that doesn't work, you can buy a new axle bar - £100 - which will make it wider". Relief. And a reminder that I really ought to know more about my wheelchair. It could save me a lot of worry. As well as cash.

I tweet therefore I am

I've recently become a Twitterer (in the sense of using Twitter, not the standard definition of "1. To utter a succession of light chirping or tremulous sounds; chirrup. 2. a. To speak rapidly and in a tremulous manner: twittering over office gossip. b. To giggle nervously; titter. 3. To tremble with nervous agitation or excitement.).

I joined because I wanted to make sure no one else got my name: I can be plain old "andrewfarrow", as I am on Skype (andrew.farrow). No need to be andrewfarrow2345. I'd been reading a lot about Twitter in the papers, and I was curious about it as a communication tool. I do tend to jump on to bandwagons (Facebook, Skype). Not as they start rolling, but before they're careening along. I usually send out a tweet a day, usually on some deep thought to fit my 140 character limit.

Today I learnt from a BBC Ouch tweet that twittering might help, amongst others, people who have a high spinal cord injury: "The Brain-Twitter project...is based on the idea that paralysed people can send messages on Twitter by thinking about it, using electrical impulses. Read about it here. It's intriguing.

[Postscript. Does Johnathon Ross - @wossy - read my blog? He's just sent out a tweet thus: "I twit therefore I twam"]

Back to (spinal) school

If you've been treated at a specialist Spinal Centre, you're a patient for life. It's amazing, this continuity of care. Today I was back at the Unit for a posture assessment, to measure the pressure I exert on my cushion. It's a bit like being back at school: "when did you last check your skin? Why don't you check it every day?"; "your transfers aren't very good, are they?" It's done from a place of concern and also expertise: they know what they're talking about. Yet sometimes it just doesn't seem to fit easily with the reality of working and being a parent. Ideally, if I have a red mark on my skin, I should stay in bed. Marks are the first signs of pressure sores. They can deteriorate quickly. And they kill. But I have to get up, feed and ferry children, write. How do red marks sit with this life? I suppose the Spinal Unit would say this life won't last very long if I don't pay attention to my skin...

They also tell me I need a wider chair. Very supportively, they say I'm not fat, that my tummy is a tetra tummy, that I should not try to lose weight. I was too thin when I left hospital and now that I'm my proper size and shape, I'm too big for my chair. Not that I can replace it unless my generous friend is willing to buy me another. There's a short-term fix, but I will have to approach my friend soon. It's not going to be the easiest of conversations.

Music and movies are the food of...

 

2008 was my year of music, with the iPod connector in my new Motability car leading to an iPod for Christmas 2007 in turn leading to an iPhone (and, faithless me, I used to love my BlackBerry). I can watch a movie on my phone, go to youtube to listen to a song track from the film, visit wikipedia to find out about the band, then buy the song on iTunes, all from the comfort of a single digital device. The joys of technological convergence - a perfect storm.

And it's got even better. Credit crunching means spend less and one area to cut back is music. But I want to discover new artists. What can I do other than borrow CDs from the library? Enter last.fm. I remember reading about them ages ago and how they were seen to be the new hot thing in internet start-ups, camping in tents on office roofs, waiting for the big investment. Well, they got their cash, all £140m of it, from CBS as I read here. It's a brilliant concept, a sort-of Sky+ for music. You download the software, it listens to all your tracks then suggests things you might like. If you're into random social networking, it tells you who else likes that music. It tells you about the artist and where they're touring. But I use their "radio station" feature most. You choose an artist, then it live streams songs by similar musicians (with a "buy from iTunes" button). And you can have it on your iPhone. It's a joy.

As is Flixster. It let's you know what films are out, what's coming (on DVDs too), reviews, links to the movie trailers. It also has the social networking side. But their iPhone application has a killer feature: it uses the GPS in the phone to tell you what's on near you and the film times. You can also type in a postcode and it'll do the same for that area. It's quite brilliant.

And they're both free.

Will I walk again?

I first read about this invention over on Tim's blog. And now I've just had an email from someone else about it. Maybe it's fate. Maybe I am meant to buy one of these amazing exo-skeletons and become half-robot (I prefer Tim's description of "half-man, half-biscuit tin"). But I'm reacting with caution for a number of reasons. One, the cost: "well below $35,000". That's still a lot of money, even though I'm good at fundraising. Two, the speed you go. I spent a lot of time in hospital watching people learning to walk again with crutches and they moved so so slowly and got so tired, I wondered whether it really was worth it. Yes, I do get frustrated at always having to crane my neck. I wish I could hug my wife and children when I'm standing. I'd love to be able to get up stairs into restaurants and shops. Yet I'm not sure it's worth the trouble of holding everyone back as you walk at a crawling pace beside them. Not sure. Anyway, the third and probably biggest hurdle to me becoming half-robot is that I don't have the balance: "The target market will be the Western world wheelchair-user community, of which 300,000 are spinal cord injury sufferers who are physically able to use crutches as a stabilizing tool." I don't think I could use crutches. I think I'd keep falling over. Which would be a lot more embarrassing than having to crane my neck.

No more burnt toast

In a post a while ago, I was complaining about not being able to see the bottom of saucepans any more, how Pyrex didn't work, how sauces were trickier... And a helpful reader (thank you Sue!) has drawn my attention to "Visions", glass saucepans that can sit on the hob. Fabulous! No more excuses for burnt rice or black cheese sauce...

So, how did it feel to walk again?

No, it's not a rhetorical question. I walked today. For the first time in over two years. Admittedly backwards and incredibly slowly but I walked. I had my first session at Physability, "specialists in exercise therapy for individuals affected by paralysis" and I used a parapodium (see the picture). It's a strange thing, a sort of lower body exoskeleton. Snowshoes for feet to rest on, metal frame to support, levers for arms. You have to sway to lift your feet off the ground (and no, you can't fall over, but I didn't feel too confident on my first attempt), then lift your arms to raise your feet. It's really hard work and given I don't stand that often - maybe twice a day on my trusty Oswestry but can't manage very long - blacking out seemed a real possibility. But I loved the thing. You can wander about in the garden and if you have three hours and seven minutes to spare, you can walk a mile. I want one! More fundraising required, I believe...

That was the highlight of my two hour visit to Physability though there were many moments to choose from. Sitting on an exercise ball and bouncing? Using a home-made cross trainer? Standing on a vibrating plate? Actually moving my legs as they hung in a pulley? This last one I'd have thought impossible: I supposedly have a complete injury, with no movement below my armpits, and my legs moved from side to side. Yes, only inches and yet amazing. Never was £70 better spent. And how did it feel to walk again? Well, to be honest, I didn't really notice. I was too busy trying to co-ordinate hands, feet, swaying and lifting without falling over...

A Perfect Storm

So, I am enduring my own perfect storm of technology meltdown. (The phrase "has grown to mean any event where a combination of circumstances will aggravate a situation drastically"). First, I buy some backup software for my laptop and when I install it, it wipes my entire hard drive. The irony... Then, my BlackBerry refuses to charge or connect to any laptop, so now that the battery has run out, it's useless (and it has all my contacts on it). I run over an old but functioning mobile in my wheelchair,. My iPod won't copy its purchased music back on to my computer. And every time I try to reinstall Windows Vista, I get an "you have suffered a fatal error" message. So the chances of all this happening at the same time are what? Still, I can borrow Annika's laptop, a friend's very old BlackBerry and maybe this will spur me into buying an iPhone...