Live your potential

Dependency

My car died last week. I'd just dropped off my son at the car share and was returning home to take my daughter to school when the gearbox failed. Utterly. Five miles from home and no way to get back. And I didn't have my wheelchair with me either.

Thank heavens for mobile phones. Called my daughter, arranged someone else to drop her off, got hold of the RAC, the garage, Motability, a car hire company... The RAC towed me home, collected my chair from the house and took the car to the garage. A combination of taxis and friends collected the children from schools. And I sat at home out of the rain.

It made me realise how completely dependent I am on wheels. Without my chair, I cannot move. Without my car, I'm largely stuck at home, particularly if the weather is bad. I hate it.

No cat for you: you're disabled

I used to have three cats in my old house. I miss them. I miss the company of a purring animal sitting on my lap. And the kids would like a pet here.

All good reasons to get a cat then. It's the wrong time of year for a kitten so we decided to look at local cat rescue centres. We start with the Cat Action Trust (N &W Wilts). On their website, there's a rather lovely elderly black cat who I'm rather taken by so I call up to arrange a visit to the fosterer. I mention I'm in a wheelchair. "Oh, you won't be able to get to her. There are a lot of steps in my house". "I'll be with my children. Can they come in and take a look?". "Yes, that's fine". We arrange a time. There's a second cat we'd like to see but the fosterer can't be contacted.

The next day I get a phone call from the administrator.

"I've got some bad news. The fosterers of the two cats have been talking and they have decided you cannot have a cat. You won't be able to change its litter tray".

I'm shocked. "None of you have ever met me. How do you know what I can or cannot do?"

"I'm sorry. Life must be hard with your condition and I don't want to make it any worse. Do you have a carer?"

I'm getting angry now. "Not that it's any of your business, but no, I don't have a carer. I live alone and independently"

"Well, you won't be able to catch the cat if it escapes. You might run over it with your wheels. And you didn't tell me that you were a wheelchair user when we first spoke. You should have told me"

"I don't think my being in a wheelchair is relevant. Are you saying that someone in a wheelchair can't have a cat?" (And, I wonder, how easy is it for anyone, in a wheelchair or not, to catch a cat that's run away?)

"No, of course not. We've just re-homed a cat with an elderly lady who uses a wheelchair. But she has a husband".

I'm speechless at this prejudice but it seems I am not going to get anywhere.

Finally, a valid point is made:  "We must see how the cat responds to a potential owner, so if you can't get into the house, then we can't tell how you'll get on with each other".

I'm getting weary with this conversation. I would have felt differently had the fosterer said this when we first spoke to arrange the visit. But the fact that the two fosterers have discussed me and decided I can't adopt one of their cats without ever meeting me leaves me incandescent. This will be the first time that I make an official complaint about discrimination under the Equalities Act.

(There is a happy ending to the story. I went with the children to the Bath Cats and Dogs home. No one mentioned the fact that I was in a chair. We're adopting a cat, Rothen - he's the one in the photo.)

Pain and its purpose

I hate pain. I hate the way my back feels as if it's being roasted by a fire. I hate the way pain saps my energy and focus.

It's not as if it's telling me anything useful. That I'm tired? That I should go to bed? That I should stand? If there was some meaning or information in the pain, I think I could accept it more.

And yet the pain in my arm does have meaning, and it frightens me. It makes it harder to push. Should I ignore it and just keep moving? Or should I push less and drive more? Will it get worse as I get older? Where's the manual that tells me what to do?

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.

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.

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.

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.