Hello everybody,
Alas nothing goes quite to plan, my rendezvous with Steven Seagal went arse up mainly due to the fact I fell asleep after being too tired from writing the post telling you I was going to relax with Steven Seagal.

Ah, but do not despair for me because help is at hand.  Tomorrow, or today for many of you, I return once more to the peace and quiet of St Michael’s Hospice in Harrogate.  You may remember that I viewed my last visit with trepidation.  I did not know what to expect and it is usual to fear that which you do not know.  Second time around holds no such fear.  This is because I am taking my mum with me.

This time, I am taking a whole new set of thoughts, ponders,worries, and downright traumas with me.  Bringing mum may have alleviated the concern regarding accommodation, but I still brought a suitcase full of things I have to sort mentally, the easy stuff like bank account names being transferred, TV licence, who will take my old Vectra.

Then there’s the stuff to sort emotionally.  Seems to be popping up a lot these days and at random times like because I see a pine cone or Oscar does an unusually loud fart. But of course they are not at all random. 

Just as I feel I’m getting a hold of all the bits and pieces, it’s as if one of the little buggers escapes onto the floor.  I definitely got hold of most of them, there is just one or two loitering somewhere waiting to jump out and beat my head in again.  What I suspect I’ve done and quite unsuspectingly in my practical let’s-get-it-done sort of way is file things in a way where they need to go but possibly a little prematurely.  So the next two weeks will be used for sorting this ball of wool out.

Then there’s the hard stuff.  I’m not even sure what it is yet but it’s got something to do with being back in the same place and it’s feeling like a lot later on in time.  I’ve been trying to remember what I was like the last time I was in the hospice and other than the loss of muscle function in my neck the only change beyond this has been the jaw and neck muscles being slow to wake up in the morning. Irrespective of the assurances that all will be fine and we’ll see you here back in a fortnight, I find myself wondering how long my speech will last and when my eventual time will be.  And the more I think about it, the more irrelevant it becomes. Irrelevant because of all of you who are providing me with love, care and laughter and upon these three things I’m all set for the next big journey whenever it is.

Speak to you tomorrow from my luxury villa.
Much love,
Neil

The physical change that Neil mentions here,

‘other than the loss of muscle function in my neck the only change beyond this has been the jaw and neck muscles being slow to wake up in the morning,’

although it doesn’t sound like much compared to everything else he had lost, what it meant physically for Neil was huge. The deterioration in his neck muscle meant that if his head fell forward, he could no longer lift it back up. Aside from being uncomfortable, it would also cause a break in the seal between his skin and the ventilation mask, or worse still, the mask becoming knocked out of place altogether. Neil had to trust even more that others would be there to catch him.

Neil separates the ‘emotional stuff’ from the ‘hard stuff’ here, the hard stuff being his awareness of progression and running out of time. Nurses and specialists had been trying to have conversations with me about whether Neil had shown any signs of acceptance yet. They were asking me if he was showing any signs of wanting to die. I can honestly say there was nothing of the sort, despite having been reduced to complete dependency on others with little more mobility than his eyes and facial muscles, every breath assisted by a machine, I still felt his mind was running in the opposite direction. – Louise (2013)