Live your potential

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.

Childcare

Griffin has started at a new school in Bath and I am caught up in childcare. Well, chauffering. As it's early days for him and the days are long, we're driving him to school and picking him back up. Which means around 100 miles and four hours are given to ferrying people around. This is fine for the moment, but in time, he's going to have to catch the bus. If I'm going to be teaching, I can't be spending my life on the road.

Discover a big disadvantage to being in a wheelchair. It's very hard to turn fast when you're in a watergun fight. Griffin works out my vulnerable points and I am completely soaked. Still, I feel like a proper dad, so who cares?

Up and about, finally

At last. It's taken way too long, but this afternoon I'm downstairs for the first time since Wednesday evening. I have no idea what's caused this. Sheer exhaustion, with too much running around? An infection? Am I more susceptible to these now that I've got a spinal cord injury? Answers on a postcard please.

A thought. One of the things that had got me down the most was how completely helpless I was, how totally dependent. For someone who likes to do their own thing, it's been a nightmare. I was thinking the illness and the being confined to bed was all to do with having a spinal cord injury. Maybe, but lots of people are suddenly confined to bed for a few days and are equally helpless, even though all their arms and legs work fine. Something for me to ponder on.

But it definitety wasn't Man Flu.

And the worst thing about spinal cord injury is...

I spend a fair bit of time wondering about this, because people are always asking me. In a way, it's linked to the idea of being an inspiration for simply living. To be honest, most of the time, having a spinal cord injury is not that bad. Yes, there are all sorts of obvious downsides. Not being able to walk, for example. But I can drive; I've got a very light, manoeuvrable wheelchair (thank you, Canadian friends!). Steps can be overcome with strong colleagues. Or even over-zealous employees. A while ago, I was desperate to see Into the Wild (no, I don't remember why, and no, it wasn't that amazing. Interesting, depressing, I'd read the book...). It was only on in one cinema in London, a completely inaccessible one at that. Commenting to the staff that I was keen to see it but no matter, they became all fired up and two of them offered to take me down the back route of thirty or more steps. Incredibly kind, but slightly foolish on their part as I think they realised when we left. I'm not that heavy at eleven stone, but I'm still eleven stone, and carrying that dead weight uphill is not easy. So anyway, steps are surmountable. The constant pain is a drag, but I'm lucky in that it's not incapacitating most of the time and tramadol is a wonder-drug. Bladder leaks are unpleasant but washing machines are a godsend. I have my arms so I don't need a carer. And yes, there are all the usual things like not being able to feel the sand between my feet, or go wild camping alone and wake to the sound of rain on my tent or do rough and tumble with Griffin and Arden. The list is endless really.

Yet I don't think about these most of the time. I just live. But now I do have a real contender for the worst thing about spinal cord injury. I've been hit with a vicious infection and have spent the last two and a half days in bed. It started on Wednesday night, when I began to shake like a leaf, literally, with my teeth chattering and hands unable to hold a cup of tea without spilling it. The children were really scared and thought I'd have to go back to hospital. I can't imagine what seeing stuff like this does to them, seeing me so powerless and in such a bad way. So, I went to bed and slept for something like 36 hours, drinking a bit of water and eating the odd grape. Luckily, Annika persuaded me to get a doctor out (why do I refuse to do stuff like this? Because I don't believe in traditional medicine? Because I think my body will heal itself? Did I learn nothing in hospital?), who prescribed some heavy antibiotics that seem to be having an effect. I actually feel able to do something more than just sleep and read with one eye open. And I ate a piece of toast this morning, so things must be looking up. But this must be the worst thing about my injury. Pre-accident, I was never this ill. Post, this is the first time since hospital and I'm completely incapacitated. My whole life has stopped. I can't look after the children, I can't help Annika, I can't work. If I was teaching now, I'd not be in school. Yes, of course people get ill. Yes, of course employers would be sympathetic. But I feel completely helpless, completely dependent and I absolutely hate it. It frightens me. And for the first time in a long time, I'm grieving for my legs and all I've lost.

Stranded

Last night started badly when I got to the top of the stairs and found that Annika had moved my wheelchair out of the way and out of reach. Things went downhill from there. Sleep on the sofa till 3.30am when she realised and came downstairs to let me know that I could now come to bed (she did graciously apologise). Then the stairlift seat got bent again. Because my balance is so poor, if I need to reach something on the floor from the stairlift, I have to put my arm behind the seat to support me. The chair doesn't seem too well designed for this, and now for the second time, it's bent. That's a problem because it means I fall off. So it was last night. Weary, I get to the top of the stairs and try to transfer to my wheelchair. I fall straight off. So drag myself to the bathroom and 15 minutes later manage to get back up into my chair. Four hours later get up to take Arden to school. Transfer to the stairlift and fall off. Again. It looks like I'm going to be stranded upstairs. Call a neighbour to take Arden to school. Call the stairlift company who tell me at length about the new seat that's going to come. "Yes, sounds great but I have a problem right now. I'm stuck upstairs and I need an engineer to come out and fix the seat". "Oh, OK. I'll get someone round". Drag myself to the bedroom and struggle into my chair. It's at times like these I do wish my legs worked.

Death in all its coldness

It was Ralph's funeral today. A crematorium without a priest. I hate crematoriums. They're so soulless, conveyor belts of death with the next party queuing to enter as you leave, the standing about admiring the floral tributes, the lack of ritual. We didn't even have any hymns, just a tribute by his ex-neighbour. For someone who'd been so extraordinary, it seemed an undignified and unbefitting send-off. I wanted a Lancaster bomber to fly past or the Last Post to be bugled. Not this cold and unpassionate half hour. Half an hour to celebrate 84 years, three children, grandchildren, 50 years of marriage. It made me reflect on my own funeral and how glad I am that I survived the fall, the post-accident trauma and infections. I'd like photographs, music, addresses and readings from many people, a proper service - I like rituals. And then a big party with lots of champagne and great food, dancing. Death should be a celebration. I remember in my gap year I attended a Garifuna wake, an all night affair of partying and grieving and recollection and celebration, with the coffin in the house. That's what a funeral should be.

Peeling potatoes and other exhausting activities

I really haven't got my head around my lack of stamina. I deferred my PGCE course because I wasn't sure I would have the energy. Very wisely, it turns out. I owe a huge debt to Annika who suggested it in the first place.

The strangest things tire me out. Just been peeling potatoes to roast for Sunday lunch and I'm shattered. Is it because our kitchen isn't adapted, the sink too high for comfort? The alternative of having a bowl on my lap doesn't work too well. Overbalancing means peelings and water all over the floor. Staying at a friend's (fully adapted) house with a cooker that goes up and down at the press of a button was so lovely for cooking: made my first unburnt white sauce for ages. I think what tires me is the inability to rest my arms. When I'm shaving, I like to pause with my elbows down on the basin. Again, not so easy and again, another tiring activity. The whole morning shower leaves me weary. Bizarre and ridiculous and frustrating. Now that the kids are finally back at school, I'm going to focus on building up my stamina. Try and get into a rhythm of regular swimming and cycling. Peeling potatoes really shouldn't be such a challenge.

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.