Live your potential

Crip Lit Part 4

Awake in the night because of pain, I finish Karen Darke's book, "If You Fall". When she was 21 she fell from a cliff and broke her back. The first half of the book frustrated me: her recovery seemed too easy and swift with little reflection or learning. One minute she's on bed-rest, the next, she's competing in the London Marathon. She leaves hospital and is soon crossing Central Asia on a cycle tandem. It's all too beyond my experience to have any resonance for me.

But halfway through she has a series of revelations that challenge her and take the book to a far more interesting place. She meets a healer who works on her with crystals. She begins to meditate. And she goes to Brazil to meet Rubens, a man who's supposed to be inhabited by the spirit of a German surgeon from 1914. After reading about him and watching him work, she allows him to operate on her without anaesthetic, sterilised equipment or medical assistance in a Rio church. Rubens has no medical training or expertise but proceeds to cut open her back and manipulate her spine. Karen's uncertain it will work but asks "what have I got to lose?" I admire her attitude but surely there's a limit? No training. No backup. No sterilised equipment.

Amazingly, she feels no pain as he operates. Amazingly, she doesn't die from infection. She doesn't regain the ability to walk but she does live. And she does learn to accept her paralysis and live fully in the present. There's a great quote from Bhagwan Shree Rajneesh: "We all cling to the past, and because we cling to it, we become unavailable to the present." The book ends with her in a kayak following the route of the historical Inside Passage, a journey of over one thousand miles, paddling for three months with friends and without a wheelchair.

Reading her blog, I discover that she's subsequently skied 600km across the Greenland ice cap and climbed the kilometre high overhanging precipice of El Capitan, a giant granite rock face in Yosemite National Park, USA. She sounds pretty extraordinary! She's currently on a speaking tour and I'm going to hear her in Poole on Wednesday. I'm intrigued.

Yes, I am fab

The lovely people over at Tanni and Anni read my recent post about fashion and, with wondrous generosity, sent me a pink long sleeved t-shirt. It's delicious. It also leads to amusement. A (slightly drunk) friend read it as "there's no need to stare, I know I'm fat". Actually, I might well wear one that had those words. Nothing like stating your beliefs (well, fears in this case) up front to throw people off balance.

(Someone asked about the poster in this pretty pink picture. Yes, I did meet Bill Clinton. I'd never done anything like it before, and haven't since. Back in 2005, pre-accident, I was sitting in the garden at home one evening when I read about Clinton coming to London to launch his autobiography the next day. He intrigues me: how someone so brilliantly talented has flaws that destroyed his reputation. Annika was in Devizes so I jumped into the car, drove to the station, got the train to London, pitched up at a friend's house for a quick sleep then joined the queue outside Waterstones in Piccadilly at 4.30am. There were three of us. By the time the ex-President arrived at 1.30pm, there were over a thousand. We all got to meet him. Being ambidextrous, he shook my hand with his right as he signed my book with his left. He had an extraordinary, magnetic presence. And the softest hands.) 

Fashion victim and other clothing labels

I am a dedicated follower of fashion. I love designer clothes, particularly the less mainstream brands, although that said, my favourite piece is a full-length autumn-leaf red linen Dolce & Gabbana coat. Very distinctive but hey, I like to stand out, and it certainly made quite an impression.

That all changed when I had my accident. Now I’m a wheelchair “rider” as they say in the States - not sure I particularly like or understand that term - full length coats don’t work too well. I didn’t want to cut my D&G coat down to size as I hope one day Griffin will want to wear it.

It may seem shallow, but the thought that I’d not be able to wear any of my designer clothes any more really got me down when I was in hospital. Clothes and clothes shopping gave me a lot of pleasure and formed part of my identity. So much so that when I worked at London Arts (now the slightly clumsy "Arts Council England, London") one of the Christmas party prizes was the "Andrew Farrow Services to Fashion Award". I was afraid I’d be wearing the standard cripple uniform of tracksuit bottoms forever.

I had to confront this fear. So when I left hospital, I went back to the Designer Warehouse Sales. This is an incredible place, where I used to buy all my clothes. It's basically a big warehouse at the back of King's Cross with racks and racks of clothes and an open-changing area. Every three months they have a men's then a women's sale. I've been going for years. I bought my wedding suit there back in 1992. There's a huge range, massive reductions, a wondrous variety of customers and staff. My D&G coat should have been £1,000. It cost £100.

I remembered the venue (the old one – they’ve now moved) was on two floors and I wasn’t sure I’d be able to get in, let alone around. I went with real anxiety. I need not have worried. I could get in. I explained my (fairly obvious) situation to the staff. They were utterly charming and offered to help in any way they could. So, I had two men carry me upstairs. I had two personal shoppers who looked for stuff that might meet my needs (I particularly wanted a new, short coat to replace my D&G, and trousers that could accommodate my ever-expanding waistline). I could get around easily by myself, reach all the racks. I had a brilliant time, found loads of fabulous new clothes, including a gorgeous lime-green lightweight Macintosh jacket. I felt invigorated and restored. My life as a fashion victim wasn't over.

I sent a version of this post to the delightful Stiletto Wheels, a site I stumbled across late last year. It's great to read of others facing the same conundrum, and interesting to find websites dealing with wheelchair fashion. There's WheelieChix-Chic, with a lot of lingerie (modelled by a woman in poses that suggest she's not a wheelchair user herself), somewhat fewer dresses and trousers. Sadly nothing for men. It's run by Louisa Summerfield, who's been a chair user since she was 15.

And then there's Tanni and Anni at Rackety's, "the exciting new range of adult clothing thoughtfully created with the combined experience of Dame Tanni Grey–Thompson DBE and designer Anni McMahon. Adaptive clothing that works with you, your wardrobe and your lifestyle". I'm particularly taken with the "There's no need to stare, I know I'm fab" long sleeved t-shirt. Now, can I get away with wearing it in pink?

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.

Yoga and the mind body connection

 

Just discovered an inspirational guy called Matthew Sanford. You can find out more about him here. He's got a spinal cord injury and is an Iyengar yoga teacher. I used to love my yoga classes and spent about half an hour every morning out in the garden doing my exercises. In hospital, I used yoga relaxation techniques but since I've come home, I've not practised it at all. I miss the whole body experience of yoga, and the sense of connectedness I used to feel. I thought all that was beyond me. However, I see I'm wrong. Matthew practises and teaches yoga to a wide variety of individuals, including people with spinal cord injury. To get a sense of what he does, watch the brief video at the bottom of this page on his site. It looks like Matthew mainly practises in the States, but I wonder if we could get him to come over here? I've ordered his book and feel really excited about the idea of bringing yoga back into my life.

Hard choices

Yes, that's me in a few years. Let's hope I'm as smiley as Frank. My stairlift is pretty similar. Except my warranty (which you think might be for more than a year, given that it was brand new) is just about to expire. Since my stairlift has already abandoned me at the top of the stairs twice, both times when I was due to take the children to school, a warranty extension is a necessity. But what kind of warranty? Should I have the 1 Care at £75 which provides for a single annual service? A 1 Care Plus that for £100 more allows me call outs, though only during office hours? Would I mind being stuck upstairs all weekend? Probably not actually, since at weekends there are usually others around. Yet £300 to cover early mornings? Hmmmm. Tricky, because it also includes parts and labour. Why does everything connected with disability have to be so expensive?

Today is the day for warranties it seems. The heating people have just been round to give our boiler its annual service and to see why the radiators aren't working. They've sorted the latter but tell us that they won't service the boiler any more because it's got a small amount of asbestos and they've brought in new health and safety regulations. Great. And the computer's warranty expires tomorrow. Now that it's broken down badly three times this year (new screen, new motherboard, new hard drive), I feel unconfident (to say the least) that it will make it through another twelve months without problems. The last engineer, having heard about the blisters and scars on my leg caused by the overheating, suggests to Dell that a solution would be to offer a reduced price on an extended warranty. When I mention this to Dell (who conveniently seem to have no record of the engineer's recommendation), they offer a printer or external speakers. No thank you. The matter is now being referred "to a higher authority". I wait to hear from God or his representative at Dell.

Crip Lit Part 3

As Annika discovered, there's very little out there for children who've been affected by spinal cord injury. After my accident, she tried without success to find something that might help the children understand what had happened and what they might expect in the future. There were a couple of picture books that had them saying "will Daddy really be able to do that?" (riding), but nothing for children their age. Griffin was nine and Arden was six. I recently read Paralysed which is aimed at slightly older children (teens) - there's a lot of sex and concern about sex. But it's brilliant. Told from three different perspectives, you hear how Simon's rugby accident aged 17 affects his friends Danny and Emma. Simon is left a tetraplegic and a lot of the book allows us to hear his thoughts on how his life has changed. Whilst not going into much explicit detail, it touches on bowel and bladder management, sex and the reality of being in a wheelchair. I found it offered real insights into the world of a new-disabled man. I think it would be a good place to start for someone either affected directly by a spinal cord injury, or family members. It offers real insights and gives a very true sense of the feelings o through you gwhen confronted by such a life-changing event.

I don't want to be an inspiration

Why do I have to be inspirational now that I'm in a wheelchair? So many people say "oh, you're such an inspiration". I suppose I shouldn't complain. It's better to be an inspiration than a miserable energy-vampire. Yet I'm the same person I was before my accident. One of the most regular questions I get (from strangers, who seem so willing to talk to me now. I've always been socially adept, but this is different. Is it because I'm less threatening at my new height?  Do I attract sympathy?) is "your accident must have made you re-evaluate your life, to change your priorities, surely?". Well, no, actually. My children have always been my priority, and they still are. I have no greater sense of purpose. I've always had a sense of purpose. Breaking my back hasn't suddenly caused me to see the light. "Oh, you'll do stuff you've never done before." Um, sorry, no. Apart from going clubbing and having a large, very drunk woman falling on me, breaking my nose, blood everywhere and her complete lack of concern. That, yes, I've never done before. I think perhaps the main difference is I can perhaps have a greater impact simply because people assume I can achieve less. I liked this brief comment in the Seattle Times. And there's interesting guidancefrom the Society of Professional Journalists with a fine quote from one HolLynn D'Lil: “Being told that you're inspirational when you're doing something ordinary is an assault on your self-concept".

But hey, what am I complaining about? If I can get more work as an inspirational leader, speaker, trainer, whatever, then that's obviously a good thing. And checking out other sources for this rant has led me to a great website, Pushing the Limits. Having tried one of their suggestions, I'd have to agree that blokarting is wind-powered wheelchair awesomeness. Yes indeed. But if I want a cold reality check, just speak to Annika: "Inspirational? People should try living with you". A good test.

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...

Crip Lit Part 2

Continuing my review of literature about spinal cord injury... We have a new contender for best book. Footprints in the Snow is by Julie Hill who in 1996 had a car accident when she was 27. This resulted in a severed spinal cord (i.e. a complete injury) at T7. She ended up in Salisbury and became the first paraplegic in the world to have implants that enabled her to stand, cycle, even walk, albeit not very easily. But that's not what interested me (the treatment is still in very early days, very expensive and very unlikely to become available for decades, if ever). What I enjoyed about the book was its refreshing honesty. Perhaps it's because she's a woman, but she talks very openly about her emotions after the accident: the utter despair, the feeling that her life was over, the fear that she could never again be a real mother to her young children. Having felt that way at the beginning, I was reassured and comforted. A good book for newly-injured, though it would need to be presented with the big caveat about her treatment...