I have no idea where to look

Hello there everyone,
I’m getting a little more settled here at St Michael’s. I spent most of the day yesterday in a complete haze and yesterday evening sat with my mum watching, wait for it, Coronation Street followed by Coyote Ugly! Fortunately Guinness and Port and lemon seemed to take the edge off it.

I apologise for the shortness yesterdays post, this was due to a number of factors. Firstly, I was thoroughly done in. Secondly, my mum has broken a wrist and has a cast on therefore it took about three half hours for her to push my chair across the carpet because my network cable wasn’t long enough! Thirdly, between the aforementioned fantastic broadcasts I needed the toilet – I hear you saying ‘No Neil, No!’ but I say if we are sharing then we are sharing. Basically, it involves three or four members of staff helping to remove my trousers and fit the sling for the hoist. The straps are then looped and fit it to the hoist following which I am lifted into the air so that my backside can clear the bed, upon which a plastic commode pan is placed for my use. The same applies in reverse except for the fact that I have to be lowered on to the bed in order to have my trousers lifted which means being unattached and reattached to the sling and hoist. This process takes about a minimum of 20 to 30 minutes with the professional staff at the hospice, so again you can appreciate the strength it takes Louise, my mum and all our other nonprofessional friends who have, pardon the pun, mucked in. All are to be applauded.

Now about the title subject. I am currently lying in my bed in the same room I had before, not at all what springs to mind when one thinks of an institution such as this, with its timber-topped stone fire surround, the hexagonal coffered ceiling, ornate cornice and stone mullioned windows providing a view over trees, fields and one of the beautiful viaducts carrying the Leeds-York railway. This is one of the ways to look. This is longing and the freedom I do not have.

Another way to look is at the full-size hospital bed I lay in, the health and safety signs on the door, the hoist standing in the corner of the room willing me to want to move, the movement of professional staff as they answer the call of nearby alarms and finally the constant breathe and sigh of the ventilator beside me, like a metronome clicking away life before my eyes. This is another way to look. This is inevitability.

Another way to look is at the grand fireplace with its tiled slips, stone surround and heavy timber mantelpiece incorporating egg-and-dart detailing, because atop it stand a number of photographs. One is of Louise and I sitting somewhere doing something looking happy. One is of Louise and I cutting our wedding cake. One is of Louise holding Oscar under her chin after a feed when he was very little. One is of Oscar looking up from the mountain of presents he got for his first birthday. This is love and pride and what I will miss.

Every single one of them made me cry. Which way would you look?
Neil x


I remember reading this at home and feeling that Neil was very far away. Although the hospice was only a couple of miles up the road, it was too far to wipe the tears away and hold his hand. – Louise (2013)

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@ tweeted this page. 2013-04-29 15:51:40 +0100
Today's #Plattitude: on using the toilet and looking in three directions. #MND #ALS http://www.iambreathingfilm.com/i_have_no_idea_where_to_look?recruiter_id=2
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