Live your potential

Pain and trauma

If you can't feel pain, does it mean it doesn't exist? A good existential question and pertinent. I was talking about my botox with a friend last night. She was shocked that no one had come with me to the hospital and that within half an hour of the operation, I was driving to Stoke Mandeville for an intense training weekend. "Your body will be in shock. You should have rested". Yes, I did have a very large needle (with camera attachment) pushed through my urethra. Yes, said needle did inject my bladder wall 15 times. But it's the third time I've had the procedure. It feels pretty routine. And because I have no sensation below my arms, I felt no pain. I didn't have a general anaesthetic, though the surgeon did give a local one. Did my body experience trauma? How can I tell? I was extremely tired and have been sleeping very badly, but that's often the case. What other signs might there be? I'm going to have to listen more carefully to the very subtle messages my body might be sending.

Botoxed

I'm in Salisbury Hospital waiting for quarterly Botox, blogging from my iPhone. The botox is injected directly into my bladder to stop leaks. Because I have zero sensation, I don't have or need anaesthetic. I get to eat up to the time of the operation. I don't need to be accompanied. I can drive myself home and don't have to wait for a lift. So I'm one of the luckier day patients. I even get to wear not very tasteful white, thigh length pressure tights. I just need to make sure I don't watch the colour tv screen showing the needle injecting the wall of my bladder fifteen times.

Greater love hath no man than this

I love my iPhone. I can't live without it. It's my home cinema. My music system. My laptop. My X-Box. My exercise book. My diary. My phone. My sat nav. All these things rolled into a single device. It's been playing up in last few days. People can't hear me and I can't hear them when I call. So I call the Apple helpline and they troubleshoot. Nothing helps. They suggest sending it in. "How long will it take before I have it back?" "Oh, about six working days". I will be bereft. Hmm. Time to pull the cripple card: "I'm a wheelchair user and depend on my iPhone. If I don't have it and fall out of my chair, I'll be stuck like a beetle on the ground until someone walks by". "Ah. Ok, why don't you bring it in to your nearest Apple store tomorrow".

So today I drive to Bristol and back for a fifteen minute session with a tech guy. It's a one hour drive each way. However, I get to play with the amazing new iPod shuffle. And I get a new iPhone. Unfortunately, because the screen is cracked, its faults are seen as accidental damage. Even more unfortunately, it costs £200 to replace. And most unfortunate of all, I didn't take out phone insurance because it's usually such a rip-off. Big mistake. Huge. You can only take out insurance when you buy the thing. Still, I now have a gleaming spinky spanky new iPhone. I wonder if I can insure it this time...

Please don't

An open letter to the woman who pushed me on Saturday as I was near the top of the slope in Salisbury train station:

Please don't push strangers in wheelchairs. I know you thought you were being kind. I know it looked as if I was struggling. But next time, please don't push. For three reasons:

• you're invading my space. It's hard to think of an able-bodied parallel, but it would be as if I picked you up without warning when I was walking behind you up a hill and carried you to the top.
  
  
• I could fall out. My balance is very poor and if I'm not expecting to be pushed, the change of pace might make me come out of my chair. A particularly bad idea as we were right beside the train tracks.
  
  
• I need the exercise and I need to build up my stamina. The only way I'm going to get stronger, fitter and push less painfully slowly up hills will be through practice.
  
  

I imagine you were trying to be kind and helpful, so thank you for the thought. I hope you had a good time in London.

Yours etc

Disabilism

I get fed up with the endless questions on how do I cope, how do I drive, how can I ski. Can't people see I'm more than just a wheelchair user? That I have a far richer and deeper life? Last week I finally understood why people ask these questions. It's beyond their experience, this wheelchair existence. And because I'm pretty open, people want to sate their curiosity and think it ok to ask me their questions.

I came to this perhaps obvious conclusion by acting in exactly the same way I criticise others for. I was having lunch with a group that included a blind woman. She was a careers advisor but I asked nothing about her work. I'm not particularly interested in what careers advisors get up to. No, I asked her about being blind. About how she skis when she can't see (she has a guide right behind her). About how she copes with moguls (with difficulty). I don't know any blind people and it's something about which I have no knowledge or understanding. And it turns out I'm just as disabilist as everyone else. I'll try to be a bit more patient next time someone asks me about my wheelchair life.

(and completely off the point, I found this in your face signage whilst searching for a graphic to accompany this post)

Royal National Theatre, royal confusion

We went to see the Pitmen Papers today at the National, a wonderful play about the transformative power of art and creativity. A thought-provoking and inspiring work, imaginatively staged. But as I mentioned before, reasonable access at the theatre is ruined by appalling signage. Today I managed to find automatic doors at the entrance. Previously, I've struggled with the heavy and unwieldy portals and grumbled about the lack of automation in this lottery funded venue. But I was wrong: there are automatic doors. You just have to go in daylight and be very persistent in order to find them. There's a tiny arrow and hard to see words in white ("automatic door") on one of the main entrance doors, pointing round the corner. You go round the corner and see nothing that looks like an automatic door. However, on closer inspection, there's a post with again small writing... Find the button, press and hey presto, a door opens.

It's no better inside. Trying to get to the Mezzanine restaurant, I take the lift. This brings me out a staircase away from the restaurant. There is a stairlift down but no one to operate it and no bell to call for assistance. I shout to a waiter who tells me about a secret lift that will bring me to the correct level. Without his directions, I would never have found it ("it's behind the piano"). This also takes me to the Mezze restaurant, a cheaper alternative on the second floor. I can get to the first floor but the button to the second floor does not work. Nor does the alarm button. I get out at the first floor and again shout to a waiter. He explains that the lift will go to the second flooronly when the restaurant is open. My suggestion that the lift have a sign explaining this is met by a confused shrug. Signage lets down the entrance to the stalls as well. I queue by the stairs only to be directed to a side door with level access. Oh yes, there is a sign saying wheelchairs through here. But again, it's in tiny writing above the door.

The National had millions of pounds of lottery funding. I find the labyrinthine building a nightmare to navigate. Could they not have used just a little of their lottery cash to invest in some proper signs? If you've got it (access), flaunt it. Don't hide it. I'll be emailing them on Monday.

Darkness

I've been in a lot of pain over the past few days. That and sleeplessness (they inevitably go together) have made things hard. I've been struggling. Yet, as a friend perceptively observed, I make things worse for myself. Without a good sense of smell, music is my Proustian madeleine. And when I'm down, I tend to listen to dark songs such as this new discovery. In doing so, I just sink lower.

So instead, I choose light over darkness. I've made myself a "happy songs" mix, starting with a solid Van Halen (ignoring the irony of the song's title). When I start to descend, I put on this playlist and my spirits lift a little.

Wishes

Comic Relief yesterday means mufti day at school. I love Arden's unique sense of style. She looked the best by miles. We were talking about wishes: "if you could only have one..." A while ago, hers was to have an infinite number of wishes. When she did a quiz, it was to have infinite cash. But when I ask her now, it's that I walk again. I ask Griffin the same question and get the same answer.

This breaks my heart. I'm really not too bothered about walking myself: it's my bladder that upsets me. But for the kids, my paralysis is still raw. I wonder if those feelings will ever pass. God, I hope so.

Back to (spinal) school

If you've been treated at a specialist Spinal Centre, you're a patient for life. It's amazing, this continuity of care. Today I was back at the Unit for a posture assessment, to measure the pressure I exert on my cushion. It's a bit like being back at school: "when did you last check your skin? Why don't you check it every day?"; "your transfers aren't very good, are they?" It's done from a place of concern and also expertise: they know what they're talking about. Yet sometimes it just doesn't seem to fit easily with the reality of working and being a parent. Ideally, if I have a red mark on my skin, I should stay in bed. Marks are the first signs of pressure sores. They can deteriorate quickly. And they kill. But I have to get up, feed and ferry children, write. How do red marks sit with this life? I suppose the Spinal Unit would say this life won't last very long if I don't pay attention to my skin...

They also tell me I need a wider chair. Very supportively, they say I'm not fat, that my tummy is a tetra tummy, that I should not try to lose weight. I was too thin when I left hospital and now that I'm my proper size and shape, I'm too big for my chair. Not that I can replace it unless my generous friend is willing to buy me another. There's a short-term fix, but I will have to approach my friend soon. It's not going to be the easiest of conversations.

Karen Darke falling

Just back from Poole and listening to Karen talk. She's a great raconteur with a nervously fast but very engaging delivery. She fills in some of the gaps from her book and answers some of the questions I was left with after I'd finished reading. She did struggle to cope after her accident. Her moment of transformation, when she switched from thinking about all the things she used to do and could no longer do, to all the things she might be able to do happened when a close friend died in a climbing accident. "Why him and not me?"

Stories of how to deal with polar bears on the Greenland ice (buy a rape alarm) to sleeping on a vertical rock face (have a sort of plastic shelf that you attach to the rock itself) to what happens to bladder washout kits at minus 30 degrees (they freeze) to creating a climbing seat/frame (very ingenious). I don't need inspiration and have no desire to climb up a vertical one kilometre sheer rock face. But I'm impressed at Karen's tenacity and agree that if it's in your blood, then the spirit of adventure never goes away.

The venue itself, the lottery funded Lighthouse, is, I'm thrilled to say as an ex-lottery funder, a fabulous space. Wonderfully accessible, integral artworks, loads of parking, good cafe, stylish design, interesting architecture... I'm impressed and will be returning.