Spending today recovering. That’s right, just me and Stephen Segal!

Hello everybody,
It’s been a really  intense weekend as we have been filming for about six hours on each day, almost constantly.  I think that this may have been a big ask before I became this vocally challenged, okay maybe not but I might have been a bit tired.  It takes quite a lot out of you, too, on an emotional level. We are trying to let other people know what it’s like to have motor neurone disease, not just the physical challenges which become more and more difficult as time passes, but also the impact on family and friends who all become instant carers.  We’ve also being attempting to describe the more subtle emotional and physical sensations I am now feeling.

The roller-coaster ride of emotions that was this weekend has left me somewhat shell-shocked.  When I was asked what I miss most about each pair of limbs, beyond them actually moving, it took me a few minutes to decide what I'd like doing with them.  Things like holding Oscar, holding hands with Louise, playing guitar, holding a book, drawing, fixing things – and these were just a few for my hands.  For my legs, beyond the usual walking, I used to go running, riding a motorcycle, driving and elephant-riding (okay I know it’s not an everyday thing but it is a thing nevertheless!).  I felt shell-shocked because I had never felt the loss of my physical abilities before then. I think I have simply accepted my fate and adapted to each loss as it appeared.  I still think that acceptance and practicality were the right route for me, but I don’t think I was ready to confront them again in such a raw way.

Anyway, I feel it was a very worthwhile exercise and when finished will be a very powerful way of introducing people to the reality of motor neurone disease.  I hope that using the documentary will reach a far greater number of people.

The whole bloody affair has left me completely knackered though, and so I shall now retire for the remainder of the afternoon with Stephen and his own masterpiece Under Siege!

Thank you so much for your comments, they consistently keep me out of the dark places.
Much love,
Neil


The talking had really taken a lot out of Neil, as you can tell, not just physically but emotionally. It’s good to read him opening up and admitting ‘shell shock’ from his thoughts. He had been open to the camera, it had let him go to a dark place, and he had The Plattitude to help him recover through the support of the readers.

Neil could still feel his limbs, and I think this is the reason why he had never thought about missing them before. He hadn’t grieved for the loss of his limbs, he had just become frustrated at their lack of ability. I think he was feeling ‘shell-shocked’ at confronting the fact that his limbs were gone forever and so too were all the things he had been able to do with them in the past.

Strange then, that his perfect relaxation getaway choice was to watch someone else flailing their limbs about with precision and strength!

Besides Chuck Norris and Stephen Segal, Neil had also likened himself to Tigger from Winnie the Pooh. Before motor neurone disease, Neil had never lost that childlike ability to jump up and down when he was excited about something, a trait I found quite annoying at the time (especially in shops) but I now look back at it with great affection. When I think about how Neil would feel if he knew how successful I AM BREATHING had become so far, that’s the image I get, him jumping up and down like Tigger with a huge grin on his face. It was indeed a very worthwhile exercise. – Louise (2013)

Do you like this post?

Showing 4 reactions


commented 2013-04-27 00:09:21 +0100
Time for us all to jump up and down for Neil, I think. x
followed this page 2013-04-27 00:08:38 +0100
@breathingfilm tweeted this page. 2013-04-25 22:46:43 +0100
Neil spent the day recovering from the roller-coaster ride of filming I AM BREATHING... #Plattitude #MND #ALS http://www.iambreathingfilm.com/spending_today_recovering?recruiter_id=2
commented 2013-04-25 22:40:23 +0100
These were the comments on Neil’s original post:

Alison.
January 12, 2009 at 7:35 pm
You are such a colourful character.

Brian
January 13, 2009 at 12:57 am
The thing is, several years back, (ie: pre-Oz), colourful would have been the least of phrases used for Mr Platt. In fact, I think some of them, while positive, would be unprintable on this blog.

Such is your legerdemain, sir. Like a certain 21st birthday present you received in the Black Pig .

See you this Sunday.

B

Lorna
January 13, 2009 at 9:18 am
You have a canny knack of making me laugh and cry at the same time! You are doing incredibly well in your campaign and despite not knowing you or your family at all I feel as though I do through your openness and brilliant chatty posts on your site. Certainly my awareness of MND is increasing every time I read your site.

Thank you for sharing your highs and lows – I always check in at the start and end of my day just to see how you are all doing and you are all such an inspiration.

Love and very best wishes,

Lorna xxx

Ann
January 13, 2009 at 12:47 pm
What a star you are! I look forward to watching it and weeping buckets but being full of admiration for you as always. Eleanor had a lovely time talking to you when she visited. Keep on with the excellent work. I bet you are the first person to be as open and honest about all this. Your documentary should be turned into a book. Are there any publishing contacts in that long list you have. You could be in the best seller list!!! I could proof read it for you! Always been good at that!

Keep on keeping on. Big hugs

love Ann

Ann
January 13, 2009 at 12:50 pm
Lol…so much for good proof reading….missed a ? off the end of Are there any publishing contacts in that lond list you have?? Ah well….not perfect all the time!

love
Ann

Ann
January 13, 2009 at 12:52 pm
This is getting ridiculous…now seen a typo – lond not long…..lol!!

Must try harder!

love
Ann

Aunty Pau’s & Uncle Mel
January 13, 2009 at 2:32 pm
Just to let you know you are admired more with each passing day, your resolve to keep fighting is truly an inspiration to us all.

Love Aunty Pau’s
xxxxxx

Marian
January 13, 2009 at 3:40 pm
Hello Neil – just to let you know the Edinburgh based Auld Reekie Fiddle Band came to us, at George Watson’s College before Christmas, to request use of the Assembly Hall for a fund raising ceilidh in aid of MND. There has been so much interest in this that we are now hosting two Ceildhs on Friday and Saturday of this week and all proceeds are going to MND. They expect over 650 people over the two nights. That should help to spread the word!!
Hope you can have a good rest over the next two weeks.
Love to you all – Marian

Sara
January 13, 2009 at 5:39 pm
Neil Louise & Oscar,

Just wanted to let you know that we are all very much looking forward to coming down to see you at the weekend – especially the children, they have been missing you all so much.

Neil – would you be interested in the ‘Heroes Box-Sets’? Just say the word and I will try to find a space for them amongst the masses of stuff I will have to cram into the car just for the weekend!!

We love you all so much and are very proud of you.

See you Friday,
Sara x x

Peter Stokes
January 13, 2009 at 7:10 pm
Fame at last Neil. You mave have conquered YTV, BBC, the Mail etc but you now have it in writing that Ann has made a mistake. January 13th 2009 is a date for your and my diary!!
Take care,
Peter

cash & scoob
January 13, 2009 at 7:44 pm
Tango, well done bud! You are a top man. I hope you and Mr Segal have a good afternoon. Hope it all goes well going into the hospice. Will give you a buzz. Love Cash x
THE THIN SPACE BETWEEN LIFE AND DEATH
Film by Emma Davie & Morag McKinnon
Watch it online
Order the DVD
Pay it Forward
Make a donation
STEM CELL REVOLUTIONS