In New York

In New York

Thursday, 19 January 2012


I usually hate January, but this year it seems to be moving along quite quickly and I find that in my walks around our neighbourhood, to and from the High Street, along the pleasant suburban roads and under a pale wintry sky, I am listening to birdsong, watching for new buds on trees and shrubs and noticing the crocuses, daffodils and budding tulips. Maybe it’s because the weather has been pretty mild but January doesn’t seem too bad this time round.

I am very preoccupied with work this month and that might explain why time is going so quickly for me. I am so busy. For this month I am working Mondays, Wednesdays and Fridays, whilst my jobshare partner is away. I find myself constantly thinking about what needs to be done to keep things going smoothly. There are not enough hours in the day and there is certainly not enough time in 3 days for everything. This means that work is the focus of my attention at present. I noticed this the other day and mentioned it to Roch - does he feel it? I asked. Is it affecting the way I am at home? He said he was glad of it, he’s glad my focus is elsewhere. It doesn’t mean that his care is neglected in any way, just that he is not at the forefront of my thoughts. When I wake I think of what I haven’t done in work and what the work priorities are. Although having said that, the other morning, woken by Oscar (our cat) at 6am (thanks, Oscar), I was assailed by thoughts of the injustice of our situation. I seldom waste time dwelling on it, but really - how unfair is this? There was an emptiness in the core of me, an aching loneliness for the future we have lost and I felt angry for Roch and for me, for Kate and Tom. But what can I do? Useless to rail against it. Get on with it. It was a working day, so work took over and I was glad of it.

On Tuesday I went to see my counsellor and we talked about my anxiety about work and how my mind never rests. There is never enough time to do everything. Tasks - home tasks too, crowd my mind. So!

Meditation, exercise and space. This must be my mantra. Still the inner voice. Walk, cycle, move. Make space for myself. Make time for myself. Allow myself time to do nothing. (I am so bad at that). We are back to Loving Kindness now. As she closed the door softly behind me, those were the words that followed me into the afternoon. Loving Kindness.


Last Saturday was the first time Roch ventured out in the electric wheelchair. It wasn’t an unqualified success. Firstly, he has difficulty getting out of the chair. It must be lower than the manual chair, because he can raise himself from that, no problem. Even with the higher cushion, it’s difficult. Next month, he should be getting his own chair - this model is for interim use only. Perhaps that will be better.

How your perspective changes when you view the local pavements from the perspective of a wheelchair user. It’s more like an obstacle course. We had agreed that for a first outing in the chair, it would be best to keep it short and local. So off he went, me strolling beside him, over the uneven paving stones, keeping the speed low. There are trees planted at intervals along the pavements, which is lovely of course, but the older, more established specimens have roots which have succeeded in lifting the pavement in lumps and bumps making it impossible to bring a wheelchair over the path in those places. So Roch had to bring the chair onto the road (a quiet road, with no ’through traffic’) to pass. Then there was the problem of crossing the streets. Cars parked alongside the slope in the pavement and parts of the so-called sloping pavements too high for wheels to negotiate safely meant that again, Roch had to wheel himself onto the road for a time. I don’t think that experience will encourage him to go out on his own, or at all. It’s hard for him to feel so vulnerable and so frustrating to be moving along so slowly when he was such a dasher, a rusher, a ‘let’s get going’ kinda guy. It took a lot for him to make that journey. That’s a walk that takes maybe ten minutes or less for an able-bodied person. It took us forty minutes with Roch in the electric wheelchair. I guess he’ll get used to it with practice and with the better weather it may be more inviting for him to leave the house.

The Environmental Controls people are coming on 30th January. Following one consultation with Angela (Social Worker from Richmond Council, based at St. Mary’s hospital Roehampton) and a further meeting with Angela and engineer Don, arrangements have been made for Don to set up the environmental controls for Roch. He will be able to open the front door, turn lights on and off, control the TV channels (watch out Tom!) - all using remote control operated from an I-pod strapped to his wrist. I think he’s looking forward to this! He may just drive us all crazy.

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