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Despite having a mightily robust Balder wheelchair that ensures I remain seated pretty much whatever, I hadn't mustered up the courage to go out in my wheelchair accessible vehicle (WAV) in my Balder in the over two years we have had it. I did do a couple of test trips before purchase but that had been it.

I like to blame our perpetual tardiness and poor venue access in the main - you try doing something scary with your partner screaming, 'Hurry up. Faster. Faster.' Really not conducive to testing things out but, secretly, the real problem is my wimpiness. I hate being so cowardly so, recently, I have pushed myself and risked going out in our car in my Balder. Go, me, right?

I did the Tate Modern a few weeks back and then the Sadlers Wells the weekend before last. Both trips were good and bad in equal measure. I loved the freedom and independence - as did EaZyD - but going frontwards down slopes, over bumpy patches or uneven surfaces was terrifying. I mean, stopping unable to move terrified.

My pet hate is our drive which has a slope and bumpy, uneven slabs of tiles - that I chose so I can't even moan about them. As I exit the WAV, I cannot see the ramp below me at all so it feels like I am launching my chair into the nothingness of a drop and this just blows my brain apart.

Coming home after the Tate Modern trip, I reversed out which worked as I couldn’t see the drop but was tricky as hell because I had to rely on EaZyD’s left/right directions to get down.

For the Sadlers Wells home trip, I pulled up my big girl panties and exited the car frontwards ... with a bit of a wobble and EaZyD straddling the ramp ahead of me but, hey, baby wheels here and I am getting much better on the in/out with kerbs ... though still stupidly scared and whining the whole time that I am doing it!

I talked my mental crisis over with my physio as, even though I fell and broke my leg once – the mother of ghastly experiences as it took three months to knit and I had to hoist and bath with a leg brace on (not easy & very painful – the worst three months of my life so far) - I do seem inordinately afraid considering that I am a pretty good Balder user at home and with a lot of experience going out too albeit in a manual chair.

She reminded me that my visual perception is shot. Don’t know if this is a common neuro thing but one of my first neurological symptoms was being unable to step off a pavement in the City. My colleagues thought I was crazy, as did I at the time, but my head would not let my body move because the link between brain and body re position in space had stopped working. My brain just froze my body, screaming “DANGER”, and I was stuck until my logic re-asserted itself and forced me to move with difficulty.

As my illness progressed, my visual/space perception got worse and, towards the end of walking for me, I actually couldn’t walk at all unless I was able to touch something like the wall or be holding someone’s arm. If your brain isn’t getting good information from your visual cortex, it doesn’t understand it’s OK to move and your body goes into panic mode with the conflicting demands on it.

My physio and I figure that when I get in/out of car, all I see is space and my brain freaks. I had already worked out that if someone stands at either side and ahead to block the space, I can move as, at the Tate, I had asked one of the security guys to stand in my side space, not realising why at the time but knowing I felt safer with the space blocked off.

Also, when getting in the WAV, I was consciously focussing on the safety of the door entrance into the solidity of the car to block the space issue but coming out ... my perception that I am dropping into the nothingness of space sends my brain, screaming, into its’ panic&stop messages hence my over-the-top wimpiness.

Whoa, neuro stuff is weirdly complex but it really does help me to understand the why and focus on filling in the spaces so as not to freak out. Am totally intending to keep pushing the boundaries and travel in Balder comfort as often as I am able. Wish me luck.

And if you see a strange bloke, arms at full stretch, at the side of a car with a ramp and a terrified looking wheelchair using blonde female, shouting: “I’m the wall. Just think of me as the wall ...” Feel free to pass right on by and ignore the blow-up plastic doll filling space the other side ...!

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Lifestyle - June 2013
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