Live your potential

Silence

I've not written here for a long time and my absence has been commented upon. It's been a strange few weeks. I've felt a real loss of purpose and direction. I've been feeling as if I have little to say and have retreated inwards. Though this has become a slightly self-fulfilling prophecy in a way - the less I say, the less I have to say. I have shrunk. But let me state some facts:

I've been rowing intensely, three times a week for the last eight weeks. My final session was last Friday and I reckon I've crossed the Channel more than four times, racking up a total of some 140 kilometres. Fitter, faster.

I've started working for a local domestic violence project, fundraising for them a couple of days a week. It's wonderful to be part of an office environment again, to have the routine of going to work on a regular basis, to be part of a team.

I'm hating the cold. I feel so disabled.

I'm not looking forward to Christmas, my first without the kids, my first since I moved out.

Those are some facts. The feelings are confused. I feel as if I'm in a state of change and uncertainty. I wonder what I'm achieving. I think of what I achieved before my injury.

But perhaps that's the solution to my questions: there are no answers. Or at least they'll be a long time coming. So I could try accepting the uncertainty rather than fighting it. I could try accepting my lack of fluency rather than struggling to find the right words. Maybe that would be an achievement in itself.

Gliding

I enjoy sailing because it's a sport where you're on a more or less equal level with others: the fact that I'm in a wheelchair makes little difference. I love the freedom of the wind, the endless horizons, the silence.

So perhaps it's not surprising to discover I love gliding. You're on a more or less equal level with others; the fact that I'm in a wheelchair makes little difference and I have the freedom of the wind, endless horizons and silence.

It was a random decision to go. I was feeling restless and wanting to break my weekend routine. A friend had posted on Facebook about gliding so I typed in "disabled gliding" into google to see what my options were. The British Gliding Association lists eleven clubs with accessible facilities, including one about an hour's drive away from me.

I call them on the phone. "Are you flying today?" "Yes, it's good weather and there aren't too many people around. Come along". A short drive through the Wiltshire countryside brings me to the Shalborne Soaring Society and a large, empty field. A sign instructs me to drive around the edge, warning that "under no circumstances should you cross the airfield". Several bumpy minutes later, I see a caravan, a wind-sock, several cars and three gliders. The clubhouse is an old bus with a ramp, tables and a kettle. A brief bit of form filling and then a parachute is strapped onto my back and I'm wheeling across the field with an instructor. There's no hoist, so I'm lifted out of my chair and lowered into the front of the two seater glider with its dual controls: I'm going flying!

I thought gliders had to be launched by motor powered aeroplanes. This is the so-called "aerotow launch": the glider is pulled up by a light aircraft with a strong rope which is released when you reach the required height. But it turns out a "winch launch" is far more common. This involves being attached to a winch with a long reel of wire. When the wire gets pulled in, the glider gets the speed to fly into the air like a kite. When you are airborne and almost overhead the winch, you release the cable. This is what they have at Shalborne.

The acceleration is faster than a sports car: 0-60mph in three seconds. It's a strange experience, rushing over the grass and then climbing at a steep angle with no sound other than the wind over the wings. The views are extraordinary - with a crystal clear cockpit, I can see miles over the country. It's incredibly beautiful, and incredibly calming.

Then I'm flying: "you have control", says my instructor. As it's a trial flight, I'm not expected to use the rudder (hand-controlled in an adapted glider, in contrast to the usual foot operation), only the joystick. Move it left and the glider banks to the left; right and you go right; down and as the nose tilts down, you accelerate, up - well, you can guess. The glider is amazingly responsive and it only takes slight movements to get a reaction. We swoop across green fields at some sixty miles an hour and I could stay up here for ever but all too soon the instructor takes control to bring us into land. A gentle bump, a rush across the field and then a car tows us back to the launch point for another flight.

So, two flights of ten minutes for £69. This buys me membership of the club for a month and I can return whenever I wish during the month for more flights. These will cost £8 for the launch and then 25p per minute of flying. It's far cheaper than I'd expected and far easier than I'd imagined. The next stage is to work toward flying solo. I'm hooked.

 

Disability and disadvantage

I've been invited to a series of RADAR Leadership days. The first took place last Tuesday. Whilst I consider myself a leader already, I thought it would be a good chance to network and make new contacts. It was.

It's the first "disabled" event I've gone to. I'm still struggling with the idea that I'm disabled. Yes, it's part of my make-up but it's not the foundation, more like eye-liner /guyliner. So it was strange to be at an event where that was indeed our foundation: the one thing that we had in common was that we were all disabled.

And what a range of disabilities. It made me appreciate the advantage of being in a wheelchair: people with invisible disabilities, particularly those with mental health issues, often seem to have a far harder time. I don't need to explain why I'm entitled to use an accessible toilet: people can see. I suppose I encounter a purient curiosity ("how come you're in a wheelchair?") but I don't need to justify certain privileges I might receive.

I got what I wanted from the day: contacts and the possibility of coaching work. I'm keen to work with people who are facing sudden change through serious illness or injury: I've been there, and believe coaching is a useful tool to get people thinking about their futures. But reaching said individuals is hard. Being at the Leadership day made me see an alternative. As part of the Leadership programme, each participant gets to work with a coach over the length of the course. It's my first experience of a disability organisation working with coaches and I reckon it's the way forward. I've asked to join RADAR's books. Now I've got to research who else works in the field...

Speaking up about disability

Just back from my first talk for Inspirational Speakers for Schools to a group of sixth formers down in Poole. The title was "A disability awareness workshop" but with two hours to fill (and after discussions with the head of sixth form), I decided to mix things up.

So we looked at perceptions of and attitudes to disability and had a fascinating debate about what being disabled actually meant. We came to the conclusion that there was no such thing as normal; that in a way, everyone was disabled - everyone had something that they couldn't do very well. I was impressed by the willingness to consider and discuss the issues. I learnt a lot myself.

Then we looked at coping with change, using my own story as simply an extreme example, the impact it's had on me and how I've learnt to cope (or not). Very forthright, direct, refreshing questions...

Oh, it was fabulous to be speaking in front of a group again. It's been too long. Great to challenge and provoke at the same time as be challenged and provoked. More please, especially when I get feedback like this:

"I enjoyed the whole thing as it made me realise that my life could change at any moment and that I just have to adapt to it".

And if you want to get a flavour of what I was talking about, there are some excerpts here on youtube...

Still waters

I've just returned from two days of sailing. I feel as if I've been away for a week. I lose all sense of time when I'm on water. Time stops. It becomes meaningless. Perhaps it's to do with the endless horizon. Or because I feel utterly embraced by the elements.

I was on the Spirit of Scott Bader again, the accessible catamaran owned by the Disabled Sailing Association. We sailed from Portsmouth to the Isle of Wight, the Royal Southampton Yacht Club at the mouth of the Beaulieu river, then back again. Sleeping onboard was pure bliss. Silence, other than the sound of rigging, seagulls, water against the hull. Helming with full sails at ten knots was exhilarating.

There were only four of us: skipper, crew and one other guest who'd had a stroke a year ago. We talked of loss, of dependence, of changing identity. I was reminded to be grateful for a stable condition: one of the side-effects of stroke is epilepsy, unpredictable and shocking.

If I didn't have responsibilities, children, I'd go to sea. It's where I feel most calm. I'm with Tennyson:

Come, my friends,
'Tis not too late to seek a newer world.
Push off, and sitting well in order smite
The sounding furrows; for my purpose holds
To sail beyond the sunset, and the baths
Of all the western stars, until I die.

Racing a thing of beauty

I've spent the last two days in Cowes, sailing a boat of extraordinary beauty and speed.

When you enter the world of disability, design is generally left behind. You join a world of monochrome and straight lines, of function without form.

The Artemis 20 breaks the mould. She's been designed to be fully accessible and yet to be an object of desire for able-bodied sailors. With her sleek black six metre carbon fibre hull and 25m² spinnaker she looks like an America's Cup boat. And she performs like a racehorse, accelerating through the water in a flash. Take a look at this video to get a taste.

I got to sail her in the Artemis Even Keel Challenge Trophy at Cowes Week. On Sunday, twelve of us went out with instructors to practice race training in six boats before racing in the evening and on the Monday. We were a mix of people with spinal cord damage, strokes, Parkinson's, cerebral palsy - all competing equally. I'd forgotten how much I miss the thrill of competition, where skill and tactics are the ingredients you need to win, rather than a high level of fitness. Watching everyone's faces after the racing and hearing the excitement in their voices, I know I wasn't alone in my feelings.

And if you want to see a short programme about the Challenge, watch the video here (and I'm there too, at about 3 mins 50)...

 

 

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.