Live your potential

Sticks and stones...

It seems appropriate for my 200th post to be talking about words and their impact. I'm not talking about being "disabled", a term I hate and rarely use for myself. No, it's "wheelchair user" versus "paralysed".

I try to conserve my energy as much as I can. Thus, rather than get my wheelchair in and out of the car by myself (which I can do, albeit slowly and with some effort), I ask strangers to do it for me. I've changed the way I ask and the change has had surprising results. Previously, I was almost aggressively direct "I'm a wheelchair user. Please could you get my chair out of the car?" I used to have a misplaced sense of entitlement: because I was a wheelchair user, people should help me.

That sense of entitlement has reduced, though I still need to work on my attitude. Now I say, "Please could you give me a hand?"...pause for answer..."I'm paralysed. Could you get my chair out of the car?" The pause creates space for people to walk away (it sometimes happens, usually when I ask women). And the word "paralysed" seems to make a far greater impression. People often start off suspicious, anxious. But as soon as I say I'm paralysed, their faces ease, their apprehensive goes - far more so than when I say I'm a wheelchair user. Perhaps it's because the word is so specific - and so easy to imagine - whereas I could be an ambulant wheelchair user (I've seen several people get out of their cars, walk to the boot, grab a wheelchair and sit down in it). It certainly makes my life easier.

Languages of moving

I read a fabulous post the other day on Wheelchair Dancer's blog. It's about the language of moving when you're a wheeler rather than a walker.

She starts thus: "I hope that by beginning a language of moving, I might be able to communicate that using a wheelchair has modes. That wheels have their own, rich vocabulary. That wheels are an experience in themselves"

The words she uses - push, pull, stroke - express how easy she feels with her chair. As she says, "this language and these ways of initiating movement cannot be learned overnight -- they can't be crammed from some kind of primer -- they are the product of a true partnership of body and chair."

I have a long way to go before I feel easy or comfortable or at one with my chair. But I'm inspired. And Wheelchair Dancer has given me a vision of where I might reach in my future.

Rowing for England

My FES rowing has reached a new level. After several weeks of building up my quadriceps (my thighs have gained 5cm in circumference), I actually rowed today: I,500 metres in 15 minutes. It was a combination of legs with arms rowing, and arms only rowing to give my legs time to build up. It was exhausting.

But it was fabulous. I felt as if I was rowing with my whole body (I was). It's the only sport I've done since my accident where I felt almost completely "normal". When I swim, my body drags. Although I feel free in sailing, I'm not moving my legs and when I cycle I use my arms to pedal. Rowing on the Concept 2 was pretty much the same as rowing on the Concept 2 before 2006. And I have that wonderful sense of physical exhaustion that comes after hard exercise. Wonderful, wonderful.

Christmas for cripples

Another day, another email from the Reeves Foundation. This time they're suggesting gifts for Christmas: "Don't be intimidated when shopping for a gift for someone in a wheelchair this holiday season - check out the special 2009 Reeve Foundation Holiday Gift Guide". There are gifts for the cooking connoisseur, the outdoorsman, the gamer... You can buy Superman tags, wheelchair jeans or my favourite: a wheelchair fishing pole holder.

I had two birthdays in hospital. For my first one (fourteen days after my accident), I got lotions and potions and other gifts that would lighten my stay. But I wanted things that had nothing to do with my being in hospital: impractical things that reminded me of my life before and beyond the NHS.

Please don't go shopping for me from the Gift Guide. I'm not defined by my wheelchair. If you really want to get me a present for Christmas, you can buy this. Or you could simply browse my Amazon wishlist and choose me something!

Yes we can (heal you)

Another email from the Reeve Foundation tells me a cure for spinal cord injury is close. A recent article in the Sunday Times reveals how a man who fell 200ft whilst snowboarding and who wheeled out of Stoke Mandeville is now walking after receiving "groundbreaking treatment" in the USA. It finishes with a quote from the man's (millionaire) father about how “the University of Miami is doing stem-cell research on guinea pigs, which could lead to a breakthrough in spinal research".

It's the same old story: the distant carrot of a possible cure, the lure of better treatment in America. Is any of this useful to most people with spinal cord injury? Stem-cell research is seen as the holy grail of treatment for SCI - the theory is that stem-cells will be able to help regrow the damaged spinal cord. But the human spinal cord is incredibly complex. I got some idea of it when I went to the Bodyworlds exhibition earlier this year. And even if the research pays off, how long will it be before the benefits are seen in the UK? What are those who are paralysed meant to do in the meantime?

The cure/treatment incentive seems to be a reason to lose focus on the day to day challenges of living with spinal cord injury. "If I do four hours of physiotherapy every day, I may walk again". How does four hours of physio fit with a job or looking after children? And who can afford four hours of physio, let alone have treatment in the US? The Sunday Times article has led to some debate in the comments section with criticism of the NHS for not providing SCI patients with more physiotherapy. But even if the NHS had the money to provide more treatment, how would they choose who they would give it to? Do they prioritise someone who might walk? Or do they help someone improve their transfers so they can get into bed safely? I have nothing but admiration for the (completely free) treatment provided by the NHS. Without it I'd be dead. These debates just seem to take away from the truth that most people choose to simply get on with their lives as best they can. Yes, a cure would be great. But in the meantime, I'm off to do the school run.

Bereavement

Experiencing a spinal cord injury is similar to a bereavement. In an instant, you lose all function and sensation below your injury. All that is familiar and taken for granted disappears. The ability to walk. The experience of touch. The feeling of pain. And much like a bereavement, the grieving process doesn't end.

I've been missing my legs a lot recently. Most of the time I don't think about walking. I certainly don't remember what it's like. But I've been thinking I'd like to have the freedom given by legs. To go up and down stairs. To hop out of a car. To run inside to escape from the rain. I'm not sure why I'm back at this point. Is it because of the films I've been watching in the last few days? Seeing images of a yacht and remembering the sound of the rigging on the mast makes me long to be below deck again. Yes, it's possible but it's pretty hard to achieve: I'd need several strong friends or hoists. It's unfamiliar, this missing.

Then I remember Elisabeth Kübler-Ross' five stages of grief: denial, anger, bargaining, depression and acceptance. You don't necessarily go through all stages (I'm not sure I've done much bargaining as such. Perhaps: the "if I imagine walking every time I'm lying in bed, maybe I'll walk again" type of bargaining). You don't necessarily go through the phases in order. But you can go back through the stages.I reckon I'm touching on the "depression" episode again. I don't feel depressed as such, more sad, experiencing a sense of loss. I'm beginning to realise and accept that this feeling is fine, that it's an ebb and flow throughout the days: sometimes I accept, sometimes I have this sense of loss. And at the moment, the sadness is close.

Collisions

I was disturbed by the recent ITV drama Collision. Not because of the subject matter (a multiple car crash). Not because of the stories (some of them pretty unbelievable). No, because one of the characters was a wheelchair user. She was the daughter of the investigating police officer played by Douglas Henshaw; she'd ended up in a chair after being hit by a drunk-driver.

I was disturbed because of the depiction of her character, Jade Tolin. Although I've not seen any films featuring wheelchair users since my accident, I know the stereotypes: chair users being displayed as victims, bit-parts, unable to cope. Jade was I more insidious: the only time we saw her was in her father's house and her only role seemed to be to cook and pour him drinks. Although apparently a paraplegic, she moved with real awkwardness and seemed completely separate from her chair. "Do I look like that?", I wondered.

I've checked out my fears with a few friends. I don't look like that. I can look uneasy when I transfer, probably because I don't transfer with any grace. But I don't move awkwardly. And it turns out that the actress, Jo Woodcock, perhaps moves so uneasily in a chair because she isn't actually disabled.

Voice of the voiceless

I've just finished completing Real Time Feedback (RTF) in the hospital. RTF does what it says on the tin: (anonymous) feedback is obtained from patients and it's instantly passed on. RTF is carried out by central Trust staff, volunteers and governors. This was my first experience and I'm dead impressed. RTF uses a small calculator type device to enter a patient's responses and the device then sends the data back to the administrator's computer. The data is collated and within an hour of my leaving the ward, a report will be emailed to the Senior Sister for action.

There are twelve questions and the answers are multiple choice: sometimes a simple "yes" or "no". Sometimes ("how clean is the ward") more complicated: "very" "fairly" etc. They're well thought through and brought no confusion. There's a form where I can write up any other comments made or issues raised. I asked the Senior Sister whether she found the reports helpful. "Yes, very. I can take immediate action if a problem is raised, for example, if people don't know which nurse is looking after them: I'll gather the nurses and ask them to ensure they introduce themselves to their patients". I think the beauty of the system is its simplicity. I'm given the questions and the device (which is actually designed for school homework but which seems ideal for this purpose). I'm given clear instructions on how to use the machine and how to handle the process.

Despite the multiple choice answers, there's still the opportunity for individual responses. And I'm free to interview whomsoever I wish. I ask the Senior Sister if there are people she thinks I shouldn't interview (those recently out of surgery, for example) but otherwise, it's my own random sample of patients. There is room for some subjectivity and thus discrepancy. "Do you know which nurse is looking after you today?" could refer to the Senior Nurse or Ward Nurse or another. Interviewers will have varying amounts of time so will have more or less commentary to add. But on the whole, it's an excellent system. It's also not a static process: there's going to be a meeting of interviewers to see what changes need to be made. It's refreshing to see such patient empowerment. It's impressive to see how instant the feedback is and how quickly it's given back to the relevant ward. It's encouraging to see how simple the technology is. The corporate sector could learn a lot from Real Time Feedback: how to listen to their customers and how to act on their words.

Children and embarrassment

My children are getting older. They're getting embarrassed by their parents. They're getting less willing to go out and do things, preferring to stay at home. G is almost thirteen and his hormones are raging around his body. Adding to this combustible mix is the fact that I'm paralysed. I'm the only parent in his school who's in a wheelchair. I can't get into half the buildings. I have to sit at the front in any assemblies. The school are amazing in how they accommodate me. But I still stand out. I'm not sure how much G minds.

It's hard to know whether embarrassment is caused simply because I'm his father and all parents are embarrassing. Or is he embarrassed because of my being in a wheelchair, with its associated complications? Take yesterday for example. We go into town for lunch. As I transfer from the car, I have the oh-so-common, oh-so-annoying trouser descending moment. There's too much naked bottom poking through the back of my wheelchair for my comfort. I have five options:

- ask G for help
- ask a stranger for help
- suffer the embarrassment
- transfer back into the car, lower the seat and struggle to sort my trousers
- go home.

I refuse to take the last option because I'm really looking forward to having lunch with G. He's fantastic company and I want to spend a decent amount of time with him. I don't want the struggle of car changing. I'm reluctant to wheel through town and reveal my flesh to the world. I take option 1 and ask G for help: "No. It's too embarrassing". Deadlock. Despite my pointing out that we're in a side street with no one he knows and that his embarrassment will be over far faster than mine if I wheel about like this, G stays steady. He gets back into the car. It looks like returning home might be an option. We're saved by a stranger who stops when I ask for help. Dignity restored, G's pride intact, good meal and great conversation await. If no stranger had passed, I'm not sure what I would have done.

It doesn't feel right to force G to help. It's not my parenting style; I'd have a hard time forcing him anyway. And it's a lot to ask. He's not my carer. I don't want to embarrass him. He's had no wider support in how to deal with the situation he's in. He has no friends or relatives with disabilities. There really are no easy answers.

Perceptions and realities

The local paper wrote an interesting article about me last week, prior to my wheeling the Tidworth 3km. Interesting because it covered both my past and my present: the accident itself and its aftermath. The headline on the front page masthead ran "Trader fights back after horrific accident". This raised a surprising discussion with my children. "Horrific? I wouldn't call your accident horrific. That's a word I'd use after someone had lost their legs following an explosion or something".

I know what they mean and their attitude got me wondering. I have in effect lost my legs. The impact of the accident has been horrific. The change is shocking, so much so that when I met an acquaintance who didn't know, she started crying. One friend said it couldn't have been worse if I had died.

So why do I not think my accident was horrific? Is it to do with the way I look? If I'm sitting on the sofa, I look more or less exactly as I used to. Because of the FES, my legs are still strong. My chest and arms are bigger. But I have no visible scars. My brain hasn't been affected. My speech is unaltered. Yet I'm paralysed. I will probably never walk again. I have no sensation or function below my arms. Why is that not horrific?

Or is it because I'm relatively independent? I don't have a carer. I can drive and cook and swim and look after my children alone. I can push myself around. I don't need help eating or dressing. Yes, life is harder than it used to be but I don't feel incapacitated by my injury. I don't feel disabled.

I think I've gone too far the other way: I've denied the reality of what's happened. I focus on how I'm essentially the same person. And in some ways, I think the children have adopted the same view. I'm wondering if we've all been ignoring the elephant in the room. Whilst in many ways, my life is good, my life is different now. It's time to start accepting it was a horrific accident.