Live your potential

Take your pain away

My son has just had braces fitted to his teeth and he's in a lot of pain. Constant pain that no amount of paracetemol will ease. Pain that leaves him weak and colourless and short-tempered.

I wish I could take the pain from him. I feel so powerless in the face of it. All I can do is comfort and cherish and cook leek and potato soup. That's all. I can't ease it.

I can't imagine what I'd do if either of my children had a serious accident. I was watching my daughter ride the other day when the horse suddenly stopped. She was catapulted over its head and did a full somersault before landing. My heart stopped. There was a woman in the spinal unit at the same time as me who'd had a riding accident. I don't want another wheelchair in my family. One is quite enough.

My daughter was fine. I won't stop her riding. Yes, it's dangerous. But life is for living. I heard so many different stories about how people had their accidents in the hospital from catastrophic motorbike crashes to falling off ladders and hammocks. Fear won't stop those happening. It will just stop life being lived to the full.

Crisis of identity

We are defined by our work. Where is our definition without it?

Looking back on the four years since my accident, I've come a long way. And one of the biggest changes has been how I view work: that it doesn't have to be a nine to five, that it can be a multiplicity of activities.

I was trying to explain this to someone today who was saying I'd retired. Because he doesn't see me in an office or belonging to an organisation, I am less in his eyes. The fact that I'm developing a career around my children and fatigue did not resonate. The fact that I'm a speaker, fundraiser, government health advisor, coach, mentor and hospital governor didn't register.

I felt very disheartened. But as I write now, I'm reflecting on self-belief. I have to believe that this is the right path for me. I do believe this is the right path for me. It's hard going. It's a a slow process. But if I learnt anything from my fourteen months in hospital, it was patience. Things take time. And as anyone who's had to face dramatic change will know, finding your bearings again doesn't happen overnight.

Someone sent me a beautiful quote by Mary Anne Radmacher the other day: "Courage does not always roar. Sometimes courage is that quiet voice at the end of the day that says...I will try again tomorrow." That's all I can do. Take one day at a time. Know that I will reach my goal. And stick to my path despite the voices around me.

Invasions of privacy

 
"So how did you end up in a wheelchair?"

I'm a pretty open person. I'm happy to talk about all kinds of personal issues. Perhaps that's why I get asked about my accident so often. But there's something about this question that bothers me.

Would I be asked if I was older or much younger? Would I be asked if I had some kind of disfigurement? Why do people think it's ok to ask me how I ended up in a chair? I was even asked at the end of an interview the other day. It feels...well, unnecessary. Is my disquiet because it puts the focus on my disability rather than me? Because it emphasises my difference? I'm not sure.

I'm trying to come up with a menu of possible questions to ask in return. "When did you start to go grey?" perhaps. Or "do you think you drink too much?" I haven't come up with anything suitable yet. All my ideas sound pretty offensive. But maybe that's the point: people would get offended and I could ask them why they thought their own question was acceptable. I've not decided how strongly I feel about this. I'm not sure I'm ready to leap into these murky waters just now. But I'm dipping my toe in.

(The image is of the yachting flag "F", which, when flown alone, means "I am disabled. Please communicate with me". Perhaps I'm wearing one of these without realising).

OMG. Searching to see if there's any debate about this question and come across a guy who crowdsurfs in his chair at heavy metal festivals. It's a mad, mad world.

Jazz Warrior

  Last night, another attack of spontaneity. I drove to Marlborough in search of music, knowing that the Jazz Festival was on. No idea about access. No idea about tickets. No idea about the programme. What's to stop me?

When I get to Marlborough, there's no signal for my phone so I can't find any information. A record shop I know is open, and they point me in the direction of the box office. There are 'stroller' tickets available, giving entry to all venues. "We don't have concessions but you'll be given premier treatment". "Are the venues accessible? I don't want to be paying for music I can't get to". "Yes, most are". We agree a compromise price and I set off to discover what's on, noting the statement in the programme: "Most venues present little difficulty for disabled access. Please call the Ticket Office to find out precise details". Er, how? And will the ticket office be open? There are 21 different places I could go. Wouldn't it be easier to have a short summary in the programme?

Oh well. I head off to the nearest venue, down a hill, to find a band in a near empty tent who play a song in celebration of the M4 motorway. Great start! Then off to find the National Youth Jazz Orchestra, down another hill, forced into the road by the very uneven pavement. Past a venue with five steps. I won't be going in there then. The Fire Station is empty of fire engines, full of big band sound. Fab. Drop into another space, navigating cautiously through potholes. Back up the hill, across to the Town Hall. Big step to get over for the Tony Kofi Quartet. Thank you, Mr Steward, for your help. Perhaps that's my premier treatment.

I'm getting weary and glad it's light enough to me to push along the flat road to another venue without being run over. It's easy to get in, but the music is up a flight of fifteen stairs. Enough already. One more attempt. No, it's a pub with steps. Home time.

I'm not surprised to see no other wheelchair users. Marlborough's an old town (it's mentioned in the Domesday Book) and full of old buildings: inevitably, it's going to be hard, if not impossible, to ensure access. But the Festival could take a few simple measures to make the experience less exhausting and perhaps more welcoming: have access details in the programme; have signposting to show alternative (accessible) entrances; train stewards to know when to offer help; offer concessions... Still, I loved my evening of unexpected music and new aural experiences. And I'll enjoy it even more next year if the organisers act on the suggestions I'm going to share with them.

Celebration

On this day four years ago I was fighting for my life in the intensive care unit at Salisbury Hospital. Today, I have been rejoicing in living life when I could so easily not be here. How things change.

Seized by a mood of spontaneity and a child-free Sunday, I type "bristol breakfast water" into google and an hour later I'm at Lockside, "an Edward Hopper diner in the shadow of the CREATE Centre, with decking terrace and stunning waterside views". What the review fails to mention is that Lockside is in the most odd location beneath an underpass, that the waterside views aren't actually visible from the terrace and that's it's totally inaccessible. Yet with the help of two cooks, I'm pulled up the six steps to indulge in "Lockside's signature dish: home-smoked griddled ham, poached eggs and bubble and squeak with hollandaise sauce". It's delicious and close enough to James Bond's favoured eggs benedict to please me at many levels.

Then off to explore the Tobacco Factory and their Sunday market, and meet a friend in a different cafe on different decking overlooking a different river. We talk of joy and despair and growth and leaving the past behind. I'm stirred and moved. I've come a long way in four years. I'm reminded of how time heals, of how holding steady and living for each day is the way through.

I drive home listening to the anniversary present I've bought myself, the new Sarah McLachlan album, "Laws of Illusion". It's been seven years since her last, during which time she too has been facing her own questions after divorce: ‘Well, who am I then?’ Because I thought that’s what I was and who I was, and I’m not all that. Or that’s not my life any more and how do I move forward from there?"

Oh yes, we are all connected.

Creativity and adaptation

I've been invited to join Inspirational Speakers for Schools to talk about disability. I was put in touch with the founder, Lon Kwantes, after my Jelly moment a couple of weeks ago and I'm excited by the wide ranging programme of talks that they offer.

So I've been thinking about disability and how to convey what it means to primary school children. In an interesting report (‘Disability Equality in English Primary Schools: Exploring teaching about disability equality and non-disabled children’s perceptions of disability’) I discovered that "younger children tended to believe that disabled people would not be able to have partners or marry, while many children of both age groups did not think disabled people could be employed. Both age groups suggested that disabled people could not or should not have children because they might ‘pass on’ impairments". The author notes that "“When we talked to children about the lives of disabled people, many were appalled about how society effectively disables people, excluding them from key areas of life. Most children appear to have a keen sense of what is socially just, and consider the way that society treats disabled people to be very ‘unfair'”.

My work seems cut out for me. But the more I think about it, the more I realise that how we deal with disability is reflected in how we deal with change. What makes us unique is the way we can adapt. Everyone faces challenges. Everyone adapts.

 
I was struck by this idea of adaptation after my yoga workshop with Matthew Sanford and, oddly, during my daughter's swimming gala on Wednesday. In the pool, I noticed some of the less strong swimmers using woggles to help them. I'm now a less strong swimmer. I wondered if a woggle could help me keep my legs up, rather than being forced to drag them through the water. 

Yesterday, I tried. The woggle wouldn't stay on my legs so we tried an Aqua Back, strapped around my thighs. What a difference! I could use both arms independently to swim backstroke, rather than both together. I could use my full strength to swim front crawl, rather than struggling to keep my head above the water. Hugely satisfying. Hugely exhausting.

To cope with difference, all we have to do is be able to adapt. And that's what I'll be talking about with my primary school children.