Live your potential

Living with dignity

One of the familiar phrases in Spinal Units is "leave your dignity at the door". Spinal cord injury with its paralysis, its bladder and bowel complications means dignity is hard to maintain when you're in hospital, especially at the beginning of your stay. You are prodded and poked and invaded. There is some advantage in not being able to feel all the prodding and poking but it's still deeply shocking.

The debate about assisted suicide on Radio 4 and in the papers this morning reminded me of my time in the hospital. There was a round-table discussion on the radio about the importance of living with dignity: how if you did, then life was worth living. But the idea of dignity, I have discovered, is hugely subjective. My attitude has changed dramatically, largely because it's had to. Well, I suppose I've chosen to live with less dignity in some ways: I go out despite the risk of leaking, I travel despite the risk of falling, I go to venues with stairs despite having to be carried. I know some people who refuse to allow themselves to be carried, some who stay at home because they have once fallen in public. But dignity is a very personal thing. Everyone has to make their own choice about what they will and will not accept. Perhaps it's to do with pride. Perhaps it's also to do with the ultimate end: if I want to go to a show and the only way to get there is to be carried down the stairs, then I'll do so. The means (in that case) justifies the end.

And my attitude to dignity has changed as I've acclimatised myself to new experiences. The first time I asked a stranger to pull up my trousers was horrendous. Now it doesn't bother me (as much). I've explored (and continue to explore) what I'll tolerate: I don't mind being in the hoist at the swimming pool any more. I don't notice people's stares as much. It's an ongoing process for me, but my dignity is my own. I don't want anyone deciding that my life isn't worth living any more because they think my life lacks dignity.

Rose tinted perspectives

I'm still mulling on this idea of dependence. I was on a three day course at the weekend. I was cherished. And I realised that I enjoyed being looked after. Yes, I could have got my own coffees but I've not yet mastered the wheeling safely with hot drinks technique. I could have pushed myself up the steep hill but I was shattered from early rises.

My feelings about asking for or being offered help change. I suppose all I need to do is be aware of how I'm feeling at the time. Sometimes I do want help. Sometimes I don't. Sometimes I want to be independent and do everything for myself. Sometimes I don't. There's no right or wrong way of behaving: I just need to do what's right for me.

And I need to be aware of the impact of my choices. By not getting my chair out of the car, my damaged shoulder stays pain free. Yet now that I do get my chair in and out, the increased pain is balanced by the increased freedom. I no longer need to wait for help: I just hop out the car when I arrive at my destination. This liberation makes me question choices that have been coloured by the perspectives of healthcare professionals: my occupational therapist emphasises the need to reduce exercise in order to lessen exhaustion. This reminds me to ensure I balance such perspectives with those of others, especialy wheelchair users. There are many viewpoints out there and this is still a very new world for me. I've got a lot to learn.

Snowbound

 

I am snowbound. I have been stuck inside the house for days. And now I understand how people can die at home in bad weather. I'm fearful of pavements. I'm alarmed by ice. My wheels spin in the snow and I go nowhere. I went out to the car yesterday and got stuck. I'd thought that if I lifted my front casters off and balanced on my back wheels, I'd be fine. But a combination of poor back-wheel balance and deep snow left me trapped. I'd still be there if my daughter hadn't wondered where I was. 

It's given me a deeper sense of the implications of being paralysed. This is the most disabled I've felt for a long time. I'm trapped by the weather and appreciate why people who are unsteady on their legs are reluctant to leave their homes. And I'm struck by how easy it would be to freeze to death: a slip when walking to the car, falling... It's so cold I don't think I'd last long in the snow. And because I can't safely get to the car, let alone further, my horizons have collapsed to the four walls around me.

The cold takes me back to basic needs: the need to stay warm and sheltered. I just want to stay in bed with my three duvets and read. I wonder how wheelchair users in cold countries cope. The kids are thrilled that their schools have been closed. I don't share their enthusiasm. Snow should be about playing and fun and snowball fights and sledging and excitement. Being a (literally) sitting target in a snowball fight loses its appeal after a while. I've lost the joy that comes with the cold. I simply want to hibernate.

Avatar

   I joined the crowds to watch Avatar the other day. It was a surreal experience wheeling out after watching a movie where the hero is a paraplegic marine. I felt exposed in a way I rarely do.

I didn't recognise Sam Worthington, even though I'd seen him in Terminator Salvation a while ago. I thought he really was paralysed. His legs were thin, his transfers effective, he looked comfortable in his chair. And he has a lot of screentime not being an avatar (you have to see the film) - far more than I'd expected. He falls and can't get up; he revels in the sensation of his toes in the sand (that struck a real chord); he thrills in his new legs and can't stop running. It's well-observed.

Yet there are elements that made me feel uncomfortable, such as when one of his colleagues drags him backwards by his chair because she wants him to stay by her side. I suppose that could happen: I've found myself been unexpectedly pushed up a slope. I'd hope that people would realise that my chair is part of me and that to push it is invading my space. But in reality people don't realise this, people do sometimes grab my chair without my asking. So maybe the scenes in the film are true to life.

And the film brings a little of the reality of paraplegia to a massive audience in a way no other film has done before. So whilst it's not perfect, it raises awareness. It shows that it's possible to live a life pretty similar to those around you. It exposes some of the prejudice you might encounter in a wheelchair. No commercial film is going to be able to convey what it's really like and most that show paraplegics have flaws: the lawyer in Notting Hill, Tom Cruise in Born on the Fourth of July... But isn't it better to include a wheelchair user even if the actor themself is not disabled? I'd rather see an able-bodied actor using a wheelchair on screen than see no wheelchairs at all. 

Standing up, looking down

  
Language is a useful tool for understanding attitudes. I've been pondering on the height difference I now experience in a world where almost everyone is taller than me. And it occurs to me that some verbs reveal how patronised I can be as a wheelchair user: people look down on me, I can't stand up to them... I've noticed this whilst watching the Channel 4 series Cast Offs about the six disabled people on an island: how Dan, the wheelchair user, is always sitting down (of course).

The idea and meaning of standing has been on my mind because I've been criticised and judged by acquaintances in recent weeks for some of my decisions. The vehemence of the attacks have shocked me. Talking with friends makes me wonder whether the issues are more complicated than they seem (aren't they always?). Are people bringing their subconscious prejudices to bear? Do they view me with pity/misunderstanding/disgust because they see me as a victim? Do they see me or my disability? Do they feel they have more right to put me down because I can't stand up to them physically?

It's not something I've experienced before and I'm not sure how to process or even express my thoughts. I'm finding this hard to write - I simply can't find the words. It's a difficult issue to address because I myself am not that comfortable with being disabled. I'm still coming to terms with the reality of my situation and haven't yet fully understood the complexity of feelings I have about it. So it will be hard for me to address with others, especially since (I imagine) they will give the kneejerk response "of course we don't view you differently".

I remember a comment a friend made when she heard about my accident: she said it could not have been worse if I was dead. Her words threw me. But they give a glimmer of insight into how people might now see me, how they might not see beyond the wheelchair. And the height difference is an issue: reading a British Medical Journal article about bullying, it seems that shorter people are more likely to be victims. I'd be interested to know what others think.

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.

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.

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.

Same but different

I'm generally pretty upbeat about being paralysed from my chest down. I talk about the free(ish) car, the free tickets, the VIP airport treatment. I have my hands, which are a lot more useful than legs. I don't need a carer. I'm independent. The list goes on: there are many positives, and I'm a positive kind of person.

But there's a danger in this approach. Too much emphasis on my being ok can deny the reality of the spinal cord injury I live with. And I sometimes think people forget I'm paralysed. I like that but it can also be frustrating at times. Because the reality of my life can be summed up in one word: hard. My life is much tougher than it used to be. I'm in constant pain. I get far more tired. I fear leaking and the humiliation of leaking in public. Getting dressed is a struggle and changing trousers in a wheelchair is impossible. I worry about falling out, especially crossing roads at night in London when I can't see the potholes. I can't jump kerbs easily. I have to ask for help pushing up hills. I can't reach many shelves. Shopping is no longer a solo activity. I have to book accessible restaurants. I can't go rock-pooling with my children. I can't chase them over fields. I sometimes fall when transferring from bed to chair or chair to sofa. If I fall upstairs it takes me five minutes and a lot of dragging to get back up again. It's far harder to lose weight once gained (and it tends to go straight to my waist). My trousers usually slip lower when I transfer out of my car and I have to ask strangers to pull them up. I can't feel touch below my injury: a massage is no longer a wondrous whole-body experience. I can't do much yoga any more. I have to carefully check surfaces before I transfer: if I sit on a pen, say, it could lead to a pressure sore. I can't make subtle entrances if I'm late for meetings. Staying dry in the rain is no longer possible. I can't stay at or visit any of my friends' houses in London because they all have steps. I can't get to Griffin's room because the stairlift only reaches Arden's. I can't get out of my chair to have a picnic unless helped. I'm always anxious wheeling with hot drinks because if they spill, I won't feel the liquid as it burns into my leg. I'm covered in scars on said legs from such burns. I'm almost always cold...

Oh the list is endless. It goes on and on and on and it's somewhat depressing re-reading it. Of course there are ways round most of these challenges. But today I'm accepting and explaining the reality of spinal cord injury: life is tougher than before.