Live your potential

Changing lives

  It's extraordinary to watch someone rediscovering their body after years of paralysis. Last Friday, I saw a man brought to tears by finding something that he thought he'd lost. I was in a yoga workshop being led by Matthew Sanford, and the work he did brought back such feeling and sensation that people wept. I know, because I was one of them.

I'd been excited to discover that Matthew was coming to the UK. After reading his book over a year ago, I've been intrigued by his work as a paralysed yoga teacher but he's not been in the UK before. He was worth the wait.

He's not as I imagined. He sits quite unevenly in his chair. His feet rest on tip-toe. But he has a wonderful presence: calm, centred, authoritative and full of light. He talks with passion about adapted yoga, about how it's a privilege to teach because people with disabilities implicitly understand things that others realise only after years of practice: that yoga is about inner sensation as much as outward posture, that not being able to feel enables you to feel far more deeply.

The class was a mix of chair users and yoga teachers wanting to learn. Each of us in chairs had wooden blocks on which to ground our feet. We worked on feeling our base, sometimes with teachers assisting by pressing knees in or feet down. The difference the contact made was extraordinary: I felt connected to my whole body in a way I'd not felt since my accident. Warmth flowed through me. Not just inside my body either: those who were helping commented on the heat.

It's impossible to explain. It makes no logical sense to me. In theory, I have zero sensation below my arms. If I rest a hot computer on my leg, it will burn through my skin because I can't feel it: I have three scars from just this. And yet, I could feel and generate warmth throughout my body in this workshop. It doesn't make sense. I'm still absorbing the experience.

Jelly moulds

I've been finding new ways of breaking down isolation. It's too easy to spend days alone, particularly when the effort of getting out is disincentive enough. Often after spinal cord injury, people will become homeworkers (or simply home-livers). It's not healthy to do this full-time. And I'm speaking from bitter experience.

So I was thrilled to come across Jelly, an opportunity to meet up with other home workers in a venue with free wi-fi, great coffee and stimulating conversations. Last week I headed across to the Old Church School in Frome, accessible, bright, delightful. I met a designer, photographer, coach, climate change activist... and spent a morning working reading learning chatting laughing, paying for nothing other than coffee and the petrol to get there. 

Find out if there's one near you. Break free of isolation and find out that you're not as alone as you might fear.

Danish delights

 
I'm sitting in Copenhagen airport after a weekend reunion with coaching colleagues from Sweden, Japan, Barcelona and London. I've had a Danish pastry in Denmark (much the same as in the UK, but how could I resist?) and a barbecue in Bjarred... I've explored Freetown Christiana, been pushed 200m up a seventeenth century observatory and eaten open sandwiches in the rain, wrapped in the cafe blankets. I've discovered that it's a 15 minute train ride from Denmark to Sweden, that the currencies are both kroner but both different, that all Scandinavians seem to speak English with ease.

Access is good. Trains have several floor height doors with ramps that come out almost to the platform. Almost. If I could safely manage backwheel balance, the six inch gap would be easy but I must ask for help. Pavements are level though there are many cobbles. All stations seem to have lifts. Copenhagen itself is an intriguing city, easy to get around, masses to do. I'll be back.

Alone on a wide wide sea

    Back from a day's sailing on the Spirit of Scott Bader, courtesy of the Gwennili Trust, I'm pondering on the nature of loneliness and solitude. I love the sea. I feel so comfortable sitting on boats looking at the waves, tasting the salt on my lips, swimming in the ocean. It's a form of meditation.

This was my first time sea-sailing since my accident, and it was strange. No opportunity to go to the bows and be caught by the spray. No chance to sit on the nets above the water. No standing on the forestays ready to jump into the waves. But magical, nonetheless. The space, the emptiness of the sea, the driving rain. I found myself immersed in the experience, not trying to recreate what I've done before, simply just being, fully feeling the elements. Needless to say, this immersion didn't need others: it was a solitary thing. 

Solitude has such a range of emotions attached for me, from crippling loneliness to a calm contentment. I move between the two, fearing the idea of being alone for a long time, to simply just being. I don't think I've ever really lived alone and I'm experiencing what's a common enough thing for people after spinal cord injury (and many, many others). I notice that I can pass through the crushing loneliness. I notice that loneliness stalks when I'm less busy. I notice that loneliness can be eased by anticipation. What a journey of discovery this year is turning out to be.

The fear of ageing

My mother's just had a hip replacement. She chose to recover after the operation in an old people's home for ten days. I picked her up from the (very modern) NHS Treatment Centre and took her down to the home. It was intensely depressing.

The location is pleasant enough - overlooking fields, a farm with cows that sound like people crying in distress, the hum of the road. The staff are wonderful - friendly, polite, helpful. But it's deathly quiet. All the residents seem to be in their rooms, where they have all meals apart from the occasional communal lunch.

I fear ageing far more now I've got a spinal cord injury. (I'm not alone). I know that my shoulders will give way eventually and I'll become increasingly dependent. We all age but I worry that I'm ageing prematurely fast. And the idea of ending up alone and isolated with only the cows for company fills me with horror.

Denial

I'm still pondering on this idea of the acceptance of difference. I'm sitting on the train, besuited and booted, off to a Board meeting. I look the archetypal professional with my coffee and smart phone and newspaper. But I don't feel it.

I'm sitting opposite someone who looks quite like me and I'm full of grief. I watch as he lounges comfortably in his seat, his body sprawled against the chair, his arms loosely curled. He seems so at ease and I feel stiff and awkward and in pain. He wanders casually off to get a coffee and I'm stuck against a table. These reminders of change are hardest. I've lost my identity as someone who travels the country to speak at events, creates new networks, manages teams. Yes, I'll put on a facade of articulate confidence when I get to this meeting. I'll contribute and participate. But I won't feel at ease. I'll notice the rigid back of my chair, my awkwardness as I try to balance and write at the same time.

I think I'm confusing two issues. One is about the professional self I left behind when I decided to move our children out of London and run a toyshop in the country. I'm lucky in that many spinally cord injured are unable to return to their previous jobs. In theory, I could go back to a more professional career.

The other issue is the unease I now feel in more formal settings because I'm in a wheelchair. They overlap but they are different. One's a lifestyle choice: being the main carer means that I have to fit my hours around my ex-wife's and that doesn't sit well with a high-powered career. I don't see that situation changing for quite a while. I hope the other, this lack of ease, will fade as I become more accepting of my new sitting-down view of the world. I hope.

Same but different

A great piece of writing by the always thought-provoking Wheelchair Dancer got me wondering about how my life has changed since my accident.

She writes "I don't have my old life any more; I built a new external life. My new disabled life focuses on disability, disability arts, and disability culture; I and my disability are situated right in the middle of it...I don't experience this life as a kind of continuation of my able-bodied life".

I do. I do experience this life as a continuation of my able-bodied life. Very few of my friends are disabled, I don't live in an adapted house, I don't work in the disability field. There's a pressure to move that way - "oh, you're articulate and have many contacts - why don't you become a campaigner or activist?", I'm often asked. "You're an inspiration. You could make a real difference".

I don't want to. I don't want to be defined by my disability. Yes, it's part of who I am, but I'm far more than that. And at the same time, I now have a real insight into the world of disability, so perhaps I should be less blinkered about it. Perhaps I should focus my coaching practice on people who suddenly find themselves in wheelchairs. Perhaps I should campaign more vigorously. Perhaps.

I am ambivalent. I'm part of the disabled community now, if there is such a thing. I'm part of the community made up of people with spinal cord injury. I've got a lot in common with said community. Yet. Yet. The idea of spending a week hanging out with people in wheelchairs would not be my first choice of holiday, unless I could learn a new sport and get to bed early. Is this denial? Simply anti-social? I know I still don't accept myself as disabled, so maybe that's why I don't feel at ease in a world where what we have in common is our spinal cord injury rather than our love of, say, dance or music. I suppose it's because I've always refused labels, seeing myself as able to move between boxes. I was the only elite rower who was an arts student in my college, the only arts student who went potholing. Walt Whitman expresses it perfectly: ""Do I contradict myself? Very well then I contradict myself. I am large. I contain multitudes".

Our whole is so much greater than our parts. We are rich and complex beyond measure. Yes, I'm disabled, but I'm a lot of other things too. I contain multitudes.