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.
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)
January 14, 2009 at 9:38 am
Good luck with your stay in the hospice mate.
Through the tears you still make me laugh and i hope to be able to come up and see you in your luxury pad.
January 14, 2009 at 9:58 am
We have not met but since reading about you in the Yorkshire Post I have joined in your fight to support the research centre in Sheffield.
I just wanted to let you know that you have my total respect and admiration in dealing with your situation.
Keep it up you are doing a fantastic job!
Sending Best Wishesto you and your family
January 14, 2009 at 11:08 am
Just want to send you some love and let you know I’m thinking of you, Lou and oz all the time. Hope the lux villa is a good rest for you all.
January 14, 2009 at 12:12 pm
I guess you’re in warm and snug by now, so just wanted to say
Hi and let you know I’m there too:) no really, look under your covers! Boo! Let me know if I can scratch anything whilst I’m down here;)
Have a chilled day lover x
January 14, 2009 at 12:16 pm
I just want to give you a big hug. I will when I see you at the weekend. You are in my thoughts all of the time.
Love you lots,
Sara x x
Aunty Pau’s & Uncle Mel
January 14, 2009 at 12:28 pm
Think of you constantly you will be fine with your mum there, hugs and kisses from Uncle Mel and me. We will see you Monday.
Aunty Pau’s & Uncle Mel
cash & scoob
January 14, 2009 at 1:26 pm
Tango, get yer Guinness in the window, the jelly babies on the side and Seagal on the box. Oh yeah and don’t forget your straws! Hope you settle in today and get some top scran down you. Me and Scoob are always thinking and talking about you, Louise and Ozpants. Will be up to see you the weekend after next, if you want us there anytime before then to help untangle any wool just shout.
Love you mate
January 14, 2009 at 2:06 pm
Hi Neil, when I finished reading your lastest posting the first words which came into me mind was ‘WHAT A GUY’I think your ace.
Have a good rest
January 14, 2009 at 2:39 pm
I just thought I would let you know that even though we are thousands of miles away we are still thinking of you.
Craig has currently got 500 pounds in sponsors to do a sky dive on 2nd Feb and I have got each class in the primary sector of my school to do a sponsored swim the week commencing the 25th of Jan. We are also having a funky hair day to raise money for the MND Association in Feb so we should hopefully be able to bring something back in April, when we come home for Ruby’s christening. I only hope this brings you some hope for future MND sufferers. Your dedication to making people aware of MND is really paying off guys. Well done!!
I send all my love and look forward to seeing you in April. Tina xx
January 14, 2009 at 5:13 pm
Enjoy your luxury villa my dear!! Thinking of you, Louise, Oscar and all your family and friends as always. As you say – a lot of thinking to do – but you are a wise boy, an old head on young shoulders, and if anyone can figure it out you can my dear.
Love Lorna xxx
January 14, 2009 at 6:12 pm
Just waned to say I hope all goes well at the hospice and both you and your family take a little time to re-charge. My mum has respite at East Cheshire Hospice every now and then, I know she would rather be at home but it is amazing how much better she feels and how good the doctors are on keeping on top of any physical changes and medication. My dad can also catch up on some sleep from my mum’s snoring and Darth Vader impressions! Oscar must bring you great joy as I know my baby girl Eve of three months gives my mum something to look forward to every day. My husband Andy is taking part in the North run this year to support MND research, he has started his training and has lots of support from friends, family and work, plus he gets to shed a few pounds from all those Christmas goodies..
All the best
January 14, 2009 at 6:14 pm
If it’s alright with you I’d like to pop in next Tuesday. Any requests? Is there a drinks policy?
January 14, 2009 at 6:26 pm
Big love to you Neil and shall see you in a few weeks. Mum said she would like to come over and visit – she said – did you give her all her michael bolton albums back that you borrowed? hehe
get some rest you bossy peasant – im sure you will have everyone running about after you in no time!
battle of the bands going well – getting some great responses!
January 14, 2009 at 9:27 pm
Hi Neil, Louise and Oscar, I’m a friend of Sara and Douglas and have been following your story since Sara told me about the birth of Oscar while i was still pregnant with my wee girl Arianna. I haven’t written before because there didnt seem to be words to really express how amazing i thought you all were in your approach to life (and death). But i’ve decided that this was a cop-out, so here goes: Reading your blog is inspiring because it brings home the fragility of life and death in a way that is very tangible. Most people seem to be surfing through life without really even ‘touching the sides’. Almost not seeming to be present in their time here. Reading your story provides such a stark contrast to this because every moment seems to be so achingly real and so powerfully felt no matter how big, or trivial, or painful, or joyous that moment may be. Your words have helped me connect more fully to my own life and am sure will have had the same effect on many others. I think your strength and courage,especially in being able to share those times when you do not feel those things, is just so admirable. Your friends and family must be so proud to call themselves just that. I just want you to know that your voices are being heard, and your words are reaching out to people, your lives are making a difference. Much love to you all, Victoria Priest