Hey there everybody,
Apologies for my absence yesterday but, in my own defence, yesterday I did not think there would be a tomorrow. Due to a chain of unforeseen events, the details of which are not important, I genuinely thought I had drawn my last. As a result, yesterday evening and most of today I have been operating at slightly less than full capacity. However, the experience did reveal a few truths which I will share.
My very first thought was that I would not see Louise again and that she would not see me so I could tell her things that I could only tell her. I’m not entirely sure that that sentence makes sense but never mind.
My second was unbridled fear. Not about moving on but about doing it right then, not under my own terms (see advance directives stuff in earlier post). My terms also involve having the right people with me and they weren’t. With the exception of going to Canada, I think I have always had people with me, and this is one thing that I do not relish doing alone. Seeing Louise walk into the room and locking eyes gave my spirit a lift like no other could and it is this which I now know I crave when the time comes.
My third was disappointment about missing a major newspaper interview which was scheduled for yesterday evening.
My fourth was embarrassment about being minus pyjama bottoms at the second most important time in your life after your birth.
Anyway, the status quo has been re-established and I’m nearly back to what we now class as full power, the newspaper interview has been rescheduled for this evening and I’m wearing pyjama bottoms!
I have loved reading all of the comments which were posted of the last day or so, as usual they were just the tonic to improve my rather cloudy demeanour. Thanks again!
Speak to you tomorrow. Much love,
True to form, Neil resorted to his sense of humour, joking about his lack of pyjamas during the most terrifying experience of life. My previous post had worried his readers and he wanted to redress the balance and let everyone know he was still alive and still Neil.
His was determined now to carry on and do the interview for the newspaper. This was his big hope for awareness. – Louise (2013)
January 22, 2009 at 5:30 pm
To paraphrase you, here’s to the “better than average” days, mate. Stay strong.
All our love,
January 22, 2009 at 5:32 pm
Neil Neil Orange Peel,
Where do I start? I just wanted to say the last cople of days posts have had me in tears and then as usual laughter. I love you, miss you, am proud of you, am in awe of you. I’m sending you all the love, hugs and kisses in the whole wide world and with all my heart.
Keep fighting sweetie.
Love to you, Louise and Oscar,
Rachael, John and Isaac.
January 23, 2009 at 12:12 am
Hi there Neil
Just wanted you to know that you are in my thoughts often. We have never met, but you are an inspiration. Your family walk the same road as mine, and I draw strength knowing that such a beautiful soul walks in front of us. Sending you love and light, always.
January 23, 2009 at 12:49 am
Hi Sunshine. Was grand to see you once again (all be it in St. Michael’s Travelodge as opposed to home). I’ll add that I type/say ‘Sunshine’ because it’s A. a typical Western Scottish term of endearment, but (more importantly) B. it’s what you exude against all odds. I could go on, but there’s no need to. Also, I’ll sound like a poof. I’ll see you back at the ranch when they kick you out St. Mike’s
Love as always,
cash & scoob
January 23, 2009 at 2:56 pm
Here comes another Murphy!!!!
Glad to hear you’re having a better day and that your quest to conquer the media continues.
See you tomorrow. Save me some Jelly Babies!!!
Love A xx
Aunty Pau’s & Uncle Mel
January 23, 2009 at 3:09 pm
Hi Nephew, You don’t know how good it is to read the above and that you are not in that dark place – used to you been positive also glad to know that you are decently dressed, it’s a long time since your Aunty has seen you without you jimjam bottoms! Thinks will definately have changed!!!
Hope the sunshine keeps smiling down on you and yours, see you Monday.
Love to all
January 23, 2009 at 5:04 pm
good luck with the interview! x
January 23, 2009 at 7:00 pm
Hi Neil and family, you don’t know me but I found your blog through Brian. I don’t even know if I should be posting, but I just wanted to thank-you for informing someone (me) who was entirely ignorant about MND, and writing in such a heartfelt, down-to-earth and honest way about your experiences. This may seem flippant, but actually it’s testament to both of you, that you seem to have the world’s happiest-looking baby! All my good wishes, M.