Live your potential

WOMADness

Off to WOMAD with Ronald the au pair and Arden. I've been going for some 20 years but this is the first time at the new venue of Charlton Park, and the first time in a wheelchair. Sweltering heat, which is better than last year's mud, and hard to find shade. Arden and I have been going together for about four years now, usually arriving on the Saturday, camping overnight and then coming back late Sunday afternoon. For a visit with no legs, going just for the day seems a lot more sense and it's only about a 40 minute drive from home. I had tried to book an electric wheelchair in advance, without joy. Not impressed. Nor can I hire one on the day. I'd hoped to take my Cougar handcycle, but the kids have been driving it about and managed to get the chain completely stuck. So it's a good old manual chair to cope with the gravel and very uneven grass. It's hell. Exhausting and not particularly safe either: nearly fall out several times. Enough to put me off WOMAD altogether. And this is my favourite music festival. Feel very disabled, can't get into the shade for Arden because too many people, unable to get anywhere close to the stages (there are specific platforms for wheelchair users, but you'd have to get to the bands early to be able to reach them). Thank god for Ronald: he does a fair bit of pushing. I wouldn't have been able to cope without him. Sadly, Arden seems to have grown beyond WOMAD: "it's deafening, the music is awful and I'm almost passing out from the heat."

So, next year, take the Cougar. Wear a leg bag too - couldn't find any accessible toilets, though there were meant to be some around. Still, manage to see Dengue Fever, Ernest Ranglin and Bassekou amongst others, I know what to expect for next year and I got two tickets for the price of one...

Snoring

I didn't use to snore much before my accident.. Breathe heavily, yes, but not snore... How things change. Snoring does seem to be (yet another) side-effect of spinal cord injury if your BMI is above average and you use medication such as Baclofen. I have no idea what my BMI is, but I do use Baclofen. Whatever the reason, it's hell for Annika. I'm hard to wake, and even when I move, I still seem to snore. She's had to resort to sleeping on the downstairs sofa when it's particularly bad. Hmmm. Any suggestions anyone?

Happier birthdays

Birthday at home for the first time in three years. What an alarming thought. July 20th 2006 I had just arrived in hospital (sixteen days before). That was a terrible birthday, with me wired up to machines and drips, wearing an oxygen mask. Next year was better: I went back to my mum's for the day and everyone came round. But to wake up in my own bed, have the children rush in and sing happy birthday and then sit in clumps around me... I could want for nothing more. A perfect day.

Shocks to the system

Wake up to Annika saying "you've got a hole in your back". Surely it can't be a pressure sore? Had a thorough skin check on Monday evening after a massage and everything was fine then. I grab a mirror and am horrified to see what does look like a classic pressure sore, deep red, about the size of a 50p piece right at the bottom of my spine. Oh god. This means days if not months on bed rest, with no transfers - no proper washing, no ability to do childcare.

Out of all of us who were in hospital together, I should be the most careful of my skin. Having had five months on bed rest because of a pressure sore and three operations to fix it, I should know better than many how dangerous (and limiting) these pressures sores are. But why get one now? I've had plenty of falls and scratches since I left Salisbury. I'd got quite arrogant in thinking I could treat my skin any way I felt like and it wouldn't matter. How wrong could I be. I'd had a very bad fall yesterday when a strong spasm pulled me right out of my chair, and it took about 15 minutes on a rough floor to get myself back in. Maybe that was the cause.

Deeply upset. Go to the doctor to fix up regular visits from the district nurse. Then off to hospital for my six-monthly set of botox injections. Before the operation, I get one of the nurses on the Spinal Unit to check my back. "It's a bad graze, but not a pressure sore yet, though it could turn into one if you're not careful". Thank god. District nurse still coming every other day to apply a dressing, but I'm up and about. Lucky.

Cruising

Bizarrely, Vauxhall seem to have run out of wing mirror glass. None available anywhere in the UK and they're having to manufacture more. So my car is still in the garage and I get to keep my oft-admired Volvo.

Which means I get to explore its endless features. I have learnt that DSTC means Dynamic Stability and Traction Control, although I have no idea what it actually does. We've explored climate settings (tropical storm, anyone?). But best of all is cruise control. As you can doubtless tell, I've never driven a posh car before. With this, I choose the speed I want to go, push + or - buttons to get it exact on the digital display, and then sit back.

So why is this worthy of an entry on a blog about spinal cord injury? Well, with my normal car, I can only ever have one hand on the steering wheel, as the other is controlling the push-pull brake-accelerator. With the Volvo, I can experience once more the taken-for-granted normality of having two hands on the steering wheel. I have no idea why this pleases me. It just does.

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...

Brain death

Fourteen months in hospital is a long stretch by any count. Longer than I spent doing my MA in Latin American Studies. Longer than I spent working in Punta Gorda, Honduras, itself a life-changing experience. In those 14 months, I must have spent at least eight on full time bed rest. And I think my brain deteriorated during that time.

I've always had a bit of a goldfish memory, forgetting films I've seen, books I've read. This has the upside of being constantly delighted by things, even if they've delighted me already. However, since leaving hospital I've noticed that I have become more forgetful. In many ways I suppose it's not surprising. There isn't exactly a huge amount of stimulation in hospital. I wasn't sitting around having debates about existentialism. I did try to set up some daily routines to keep my mind busy: I used to read the Guardian every day and then summarise as many articles to myself as I could. I'd do sudoku and the quick crossword. I'd read. I got some interactive language CDs to improve my French and Spanish. But it wasn't enough. People can tell me stuff now and I have absolutely no recollection of what they've said by the next day. For my PGCE interview, I had to do a maths test; I couldn't answer the simplest of questions. Is this a function of age, or have I really lost some of my brain capacity? I'm worried enough to ask my GP for a cognitive assessment. And until that's taken place, it's back to sudoku, chess and crosswords.

Teaching and exhaustion

As I'm planning to become a primary school teacher, today I was observing a class in a school, near Bristol. Chris is the year 6 (kids aged 10 and 11 in their last year of primary) teacher and is himself a member of the spinally-cord-injured club. I wanted to see what kind of equipment he used and what facilities the school had provided. Definitely worth the visit, despite getting caught in gridlock traffic in Chippenham, being late and then getting pulled over by an unmarked police car on my way home. Luckily escaped with a verbal warning, lecture and a surprising well-made point: "Because I'm talking to you, you're now going to be late for whatever you were rushing for. So it wasn't worth it, was it?" Better than asking what unlikely excuse I had...

Anyway, the teaching. Normally, Chris uses a manual chair but for teaching, he has a very grand standing chair, £15,000 worth, that goes up and down at the push of a button. He uses it for assemblies and reaching stuff off shelves, but didn't stand at all during the day I was there. It's also pretty bulky, though it does have a useful horn for getting the kids to be quiet, and moves around the classroom fairly easily. It would do a lot of damage to a child's foot if it runs over it... So far, not so impressed. However, I did like Chris' Toshiba tablet pc. It's a clever beast that, with a projector, enables him to use the interactive whiteboard without having to stand. With the stylus he can write by hand, interact with programmes. I want one of those.

The school itself had made a number of adaptations (Chris was already teaching there when he had his accident). Ramps everywhere, push-button automatic doors, his own accessible toilet with a bench for changing (great idea), a covered car parking space (not something I'd have thought of, but again a good idea so you can stay dry as you transfer out of the car). All these adaptations and the equipment are largely funded by the government scheme Access to Work which forks out 80% of the cost with the school/employer making up the difference.

So, lots of useful information to absorb. Now I've just got to decide what level to teach (primary or secondary), what year and whether I'm sure I really do want to become a teacher. Not much to consider then. The other big issue to resolve is my exhaustion. The school day started at 9am and after lunch I could barely stay awake. I must build up my stamina. At the moment, there is absolutely no way I am going to manage to get through a full-time PGCE course.

Unhappy anniversary

Two years ago today I fell 30 feet from a tree and broke my back. Not a happy anniversary. I'd rather focus on my 16th wedding anniversary tomorrow. I thought I'd have felt dispirited and miserable but I've been surprisingly OK. 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. I'll celebrate my daughter's beautiful playing of the Camptown Races at her school assembly this afternoon instead.

Body image

I've always been vain. I like being thin, wearing nice clothes, keeping my skin good. So one of the many things I find hard about my injury is how my body has been affected. From having a 30 inch waist, I'm now more like 38, because of 'tetra tummy'. J Cole in his book "Still Lives: Narratives of Spinal Cord Injury" (which I've just bought) explains it thus: "In thoracic injuries and below, people are paraplegic. In T1 to T8 lesions, trunk muscles as well as chest wall breathing are lost, leading to difficulties in balance in a wheelchair, which are shared with all tetraplegics. In addition, the abdominal muscles are also paralysed, leading to the tetra tummy, a lax and large abdomen that can be so dispiriting". I hate it. I hate my bulging fat tummy. I hate the way I can't wear any trousers other than the standard SCI uniform of tracksuit bottoms, or trousers with drawstrings: all others are too hard to pull up. I can wear jeans, but they take ages to get on. For someone who used to love all his different trousers, this is particularly galling. And it's not about eating. I probably eat about half as much as I used to, can skip meals fairly easily, and yet losing weight from my tummy is very hard, since it's the muscle tone that's gone as much as extra fat being put on.

I'm lucky in that the rest of my body looks fairly normal. I'm especially pleased about my legs. At one stage in hospital when I had lost about two and a half stone in weight, they looked like chicken legs: scrawny and horribly thin. Since then though, my spasms have got worse, which, whilst actually quite dangerous in terms of how they can make transfers difficult (when my legs suddenly flex they can pull me out of the chair), allow my legs to remain pretty muscled. So, vanity and body image versus safety? I'd rather the muscled legs to be honest.